Table 2 Characteristics and Main Findings of the Included Studies

Italy

Inpatients

Semi-structured interview survey

Sampling: Random sampling

Sample size: 94

Age (yr): 64.8 ± 11.1

Gender: 38/89 (F)

Terminal cancer patients (mixed cancer sites)

Interviews guide: 5 domains and 41 items: “physiological needs”, “safety needs”, “loved and belonging needs”, “self-esteem needs” and “self-fulfillment needs” (p.404)

Unmet needs (p.406): 1) symptoms control (62.8%), 2) occupational functioning (62.1%), 3) emotional support (51.7%), 4) Nutrition (43.2%), 5) sleep (37.1%), 6) self-fulfillment (32.5%), 7) communication (27.7%), 8) information (25.0%), 9) personal care (14.6%), 10) financial support (14.1%) and 11) emotional closeness (13.8%)

Australia

Outpatients

Multiple time points pre-post intervention study ^a

Sampling: unclear

(219/613)

Sample size: 219

Age (yr): 66.1 ± 10.7

Gender: 91/195 (F)

Advanced cancer patients (extensive local, regional or metastatic) (mixed cancer sites)

Supportive Care Needs Survey (SCNS-SF34): 5 domains and 34 items

Needs Assessment for Advanced Cancer Patients (NA-ACP): only used 6 items on spiritual needs

Moderate-to-high unmet needs: 1) “not being able to do the things you used to do” (33.0%), 2) “concerns about the worries of those close to you” (27.9%), 3) “lack of energy, tiredness” (26.2%), 4) “work around the home” (23.0%), 5) “uncertainty about the future”(21.4%), 6) “pain” (20.9%), 7) “worry that results of treatment are beyond your control” (19.4%), 8) “fears about the cancer spreading” (18.8%), 9) “felling unwell a lot of the time”(17.3%), and 10) “anxiety” (15.3%)

Netherla-nds

Inpatients

Structured interview survey

Sampling: unclear

Sample size: 181

Age (median, yr): 18–79

Gender: 101/181 (F)

Advanced cancer patients (mixed cancer sites)

Structured interview with a standard list: 4 domains: emotional needs, social needs, spiritual needs, and functional needs. (p.153)

Each item including 2 parts: 1) if the issue is a “problem”; 2) actual wishes to receive professional support were labelled as palliative care needs. (p. 153)

Unmet needs:

1) functional support (62.4%), 2) support in coping (57.5%), 3) emotional support (53.1%), 4) support of informal caregivers (34.3%), 5) spiritual support (7.7%), 6) co-ordination of care (9.9%), 7) relational support (9.9%), and 8) support in communication (7.7%).

Netherla-nds

Home-based

Questionnaire survey

Sampling: unclear?

Sample size: 112

Age (yr): 58 ± 12.3 (30–87)

Gender: 66/94 (F)

Distant metastatic cancer (mixed cancer sites)

Problems and Needs in Palliative Care questionnaire (PNPC): 10 domains and 90 items

Top 10 unmet needs: 1) “difficulty coping with the unpredictability of the future” (25%), 2) “fear of metastases” (25%), 3) “fear of physical suffering” (24%), 4) “experiencing difficulties in remembering what was told” (24%), 5) “difficulties to accept the disease” (23%), 6) “extra expenditure because of disease” (23%), 7) “fear of death” (21%), 8) “frustrations because I can do less than before” (20%); 9) “experiencing loss of control over one’s life” (19%); 10) “fear of treatments” (19%)

Japan

Inpatients

Questionnaire survey

Sampling: random sampling

Sample size: 45

Age (yr): 66.6 ± 9.8

Gender: 21/45 (F)

Advanced cancer patients (mixed cancer sites)

Supportive Care Needs Survey (SCNS-SF34): 5 domains and 34 items

Hospital Anxiety and Depression Scale (HADS)

Functional Independence Measure (FIM)

Top 10 Moderate-to-high unmet needs:

1) “Being informed about things you can do to help yourself to get well” (51.1%); 2) “Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment, and follow-up” (51.1%); 3) “Concerns about the worries of those close to you”(44.1%); 4) “Anxiety”(41.8%); 5) “Not being able to do the things you used to do” (37.2%); 6) “Feeling down or depressed” (37.2%); 7) “Being treated like a person not just another case” (34.8%); 8) “Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs” (34.8%); 9) “Hospital staff attending promptly to your physical needs” (34.8%); 10) “Feelings of sadness” (32.5%); 11) “Feelings about death and dying”; (32.5%); 12) “Reassurance by medical staff that the way you feel is normal” (32.5%); 13) “Learning to feel in control of your situation” (32.5%);

Netherla-nds

Outpatients

Questionnaire survey

Sampling: consecutive sampling

Sample size: 57

Age (yr):

EC: 65 ± 11.8

PBC: 64 ± 12.2

Gender:

EC: 2/24 (F)

PBC:10/33 (F)

Incurable EC or PBC cancer patients

Problems and Needs in Palliative Care questionnaire (PNPC): 9 domains and 90 items

EORTC QLQ-OES18

EORTC QLQ-PAN26

Unmet needs:

EC: 1) “fatigue” (21%); 2) “frustration can do less than usual” (21%); 3) “shortness of breath” (17%)

PBC: 1) “fear of physical suffering” (34%), 2) “lack of written information” (28%), 3) “fatigue” (22%).

Indonesia

Outpatients

Questionnaire survey

Sampling: unclear

Sample size: 180

Age (yr):

Indonesian: 49.3 ± 10.7

Netherlands: 58 ± 12.3

Gender:

Indonesian: 133/180 (F)

Netherlands: 66/94 (F)

Advanced cancer (mixed cancer sites)

Revised Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv,24 items): adjusted within Indonesian context and deleted 9 items, and 24 items were maintained

Unmet needs:

Physical: sweating (76.2%), sexuality (75%), short of breathless (67.3%), pain (66.4%)

Autonomy: “difficulties in finding someone to talk to” (82.8%);

Psychological: “difficulties showing emotions” (84.4%)

Spiritual: “difficulties about the meaning of death” (85.4%)

Financial: “extra expenses because of the disease” (72%)

Spain

Outpatients

Questionnaire survey

Sampling: unclear

Sample size: 50

Age (yr): Mean 60.9 (33–81)

Gender: 19/50 (F)

Advanced cancer (mixed cancer sites)

Self-designed questionnaire for spiritual needs:11 domains and 28 items

Top 10 spiritual needs (p. 594):

1) “to be recognized as a person until the end of life” (8.6 ± 1.3); 2) “the need for truth” (8.3 ± 2.7); 3) “to reinterpret life” (6.2 ± 1.9); 4) “to look for a meaning to existence” (5.7 ± 2.5); 5) “the need for hope” (5.7 ± 3.5); 6) “to see life beyond the individual” (5.2 ± 2.5); 7) “the need for religious expression” (4.9 ± 2.5); 8) “the needs for continuity and an afterlife” (4.0 ± 2.0); 9) “the need for freedom and to be free” (3.8 ± 3.4); 10) “to be free blame and to forgive others” (1.5 ± 2.0).

USA

Outpatients

Questionnaire survey

Sampling: unclear

Sample size: 169

Age (yr): 62.3 ± 11.6

Gender: 107/169 (F)

Advanced cancer (mixed cancer sites)

Adapted Needs Assessment of Advanced Cancer Patients (NA-ACP): 32 items and 6 domains, without reporting psychological properties

Unmet needs: 1) symptom (62%); 2) psychological (62%); 3) medical communication/information (39%); 4) daily living (27%); 5) spiritual (23%); 6) social (20%)

Japan

Outpatients

Questionnaire survey

Sampling: random sampling

Sample size: 85

Age (yr): 58.6 ± 11.9

Gender: 85/87 (F)

Advanced breast cancer patients (stage IV)

Supportive Care Needs Survey (SCNS-SF34): 5 domains and 34 items

Hospital Anxiety and Depression Scale (HADS)

EOERC-QLQ-C30

Top 10 moderate-to-high unmet needs:

1) “Fears about the cancer spreading” (78.8%); 2) “Worry that the results of treatment are beyond your control” (71.8%); 3) “Concerns about the worries of those close to you” (68.2%); 4) “Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow-up” (67.1%); 5) “Being informed about things you can do to help yourself to get well” (65.9%); 6) “Anxiety” (65.9%); 7) “Feeling down or depressed” (62.4%); 8) “Uncertainty about the future” (62.4%); 9) “Feeling about death and dying” (62.4%); 10) “Having access to professional counseling if you, family or friends need it” (57.6%);

Taiwan

Mixed

Questionnaire survey

Sampling: unclear

Sample size: 152

Age (yr): 60.2 ± 11.0

Gender: 73/152 (F)

Advanced lung cancer patients (95.4% stage III-IV or extensive metastasis)

Cancer Needs Questionnaire (CNQ)-Chinese version: 5 domains and32 items

Hospital Anxiety and Depression Scale (HADS)

Symptom Severity Scale (SSS)

Items of highest unmet needs by each domain:

1) “things helping self get well” (65.8%), 2) “cancer remission” (63.8%), 3) “benefit and side-effects of treatment” (63.8%), 4) “test results as soon as possible” (62.5%); 5) “dealing with fears about disease spreading and return” (40.2%), 6) “doctor acknowledges and shows sensitivity to your feelings and emotional needs” (39.5%), 7) “dealing with lack of energy and tiredness” (28.3%)

Czech Republic

Inpatients

Questionnaire survey

Sampling: unclear

Sample size: 93

Age (yr): 61.6 ± 16.8

Gender: 41/93 (F)

Advanced cancer (mixed cancer sites)

Patient Needs Assessment in Palliative Care (PNAP): 5 domains and 42 items

Hospital Anxiety and Depression Scale (HADS)

EOERC-QLQ-C30

Items of highest unmet needs by each domain:

1)Spiritual: “attending religious services or other ceremonies” (44%); 2) Autonomy: “continue my usual activities” (38%); 3) Social: “being financially secure” (27%); 4) psychological: “fear of dependence on help from others” (30%); 5) physical: “fatigue” (30%);

Netherlands

Home-based

Questionnaire survey

Sampling: unclear

Sample size: 128

Age (yr): 63.6 ± 10.5

Gender: 66/128 (F)

Advanced cancer (mixed cancer sites)

Problems and Needs in Palliative Care questionnaire (PNPC): used the 12 items on information needs

Hospital Anxiety and Depression Scale (HADS)

Utrecht Coping List to measure disease-specific coping

Unmet information:

1) complementary care (93%); 2) alternative medicine (86%); 3) euthanasia: (83%); 4) care settings (78%); 5) Sexuality and cancer (72%); 6) psychological care (71%); 7) cause of cancer (65%); 8) food and diet (44%); 9) helpful devices (33%); 10) organizations that offer help (32%); 11) expected physical (20%); 12) treatment options and side effects (4%)

Denmark

NR

Questionnaire survey

Sampling: random sampling

Sample size: 977

Age (yr): mean 64

Gender: 547/977 (F)

Advanced cancer with mixed sites (95% at stage III/ IV)

3-Levels-of-Needs Questionnaire (3LNQ):12 items

Unmet needs:

1) fatigue (35%); 2) physical activities (32%); 3) work and daily activities (29%); 4) worry (31%); 5) sexuality (28%); 6) pain (23%); 7) concentration (25%); 8) depression (24%); 9) dyspnea (19%); 10) nausea (12%); 11) lack of appetite (13%); 12) difficulties with family life and contact with friends (11%)

USA

NR

Semi-structured interview survey (retrospective)

Sampling: stratified random sampling

Sample size: 433

Age (yr): ≥20y Gender: unclear

Caregivers of terminal cancer (mixed cancer sites)

Self-designed questionnaire of needs in cancer patients, including 14 areas: physical, activities of daily lives, reaction to treatment, nutrition, emotional, life purpose, social, family, financial, insurance, getting health care, medical staff, home health care, and transportation (p. 629)

Unmet needs:

1) activities of daily lives (42%); 2) emotional (21%); 3) physical (21%); 4) insurance (19%); 5) financial (15%); 6) medical staffs (20%)

Canada

Outpatients

Questionnaire survey

Sampling: unclear

Sample size: 40 (patients = 20, caregivers = 20)

Age (yr):

Patients: unclear

Caregivers: unclear

Gender: unclear

Advanced cancer patients and their caregivers (cancer site unclear)

Problems and Needs in Palliative Care- short version (PNPC-sv): 8 domains and 33 items

Patients’ unmet needs from their own perspectives:

1) “doing light housework” (25%); 2) “pain” (25%), 3) “fatigue” (25%), 4) “personal transportation” (22.2%); 5) “sleeping problems” (21.1%); 6) “body care, washing, dressing, or toilet” (20%); 7) “fear of metastases” (17.6%); 8) “pricking or numb sensation” (16.7%); 9) “experiencing loss of control over one’s life” (16.7%), 10) “fear of physical suffering” (16.7%)

Patients’ unmet needs from caregivers’ perspectives: 1) “sexual dysfunction” (100%);2) “problems in relationship with life companion” (100%); 3) “finding others not receptive to talking about the disease” (100%); 4) “difficulties to show emotions” (100%), 5) “difficulties to be of avail for others” (100%), 6) “difficulties to accept the disease” (100%), 7) “extra expenditures because of the disease” (100%), 8) “loss of income because of the disease” (100%), 9) “pain”(35%), 10) “fear of physical suffering” (29.4%)

Canada

Outpatients

Questionnaire survey

Sampling: convenience sampling

Sample size: 69

Age (yr): mean 65y (35-84y)

Gender: 34/69 (F)

Advanced cancer patients (cancer sites unclear)

Adapted Supportive Care Needs Survey (SCNS): 7 domains and 61 items: information, physical symptoms, psychological, emotional, spiritual, social, and practical, Cronbach’s α = 0.35–0.81

Unmet needs in terms of issues reported by 50% patients:

1) “pain” (63.5%); 2) “fear of pain” (62.9%); 3) “lack of energy” (52.8%); 4) “fear about physical disability or deterioration” (50%); 5) “fear about cancer spreading” (51.4%;); 6) “not being able to do things you used to” (46.9%); 7) “decreased appetite” (47.4%); 8) “feeling unwell” (44.7%); 8) “feeling down or depressed” (30%), 9) “not being able to work around at home” (44.2%); 10) “concerns about the worries of those close to you”(29.4%)

China

Home-based

Interview survey

Sampling: unclear

Sample size: 107

Age (yr): mean 57y (18-87y)

Gender: 58/107 (F)

Advanced cancer patients (cancer sites unclear)

Guided life review (2–3 times in-depth interview)

Three expectations (spiritual needs) (p.728):

1) have a nice day without pain (14.3%)

2) wish family health and happiness (37.6%)

3) fulfill patients’ dreams (witness future family events, company of their families, etc.)(45.8%)

Australia

Inpatients

Questionnaire survey

Sampling: unclear

Eligible sample: unclear

Sample size:75

Age (yr): 68 ± 12

Gender: 32/75 (F)

Advanced cancer patients (mixed cancer sites)

Needs Assessment of Advanced Cancer Patients (NA-ACP): 7 domains and 132 items

Items of highest unmet needs by each domain:

1) symptom “dealing with lack of energy or tiredness” (30.7%); 2) psychological “coping with frustration at not being able to do the things you used to do” (24.3%); 3) daily livings “getting assistance with preparing meals” (12%); 4) social “receiving emotional support from friends and family” (12.2%); 5) medical information and communication (9.3–14.9%), “getting information about non-conventional treatments” (14.9%); 6) financial “paying the non-medical costs of your illness”; (17.3%); 7) spiritual “being able to choose the place where you want to die” (11%).

Australia

Home-based

Questionnaire survey

Sampling: unclear

Sample size: 246

Age (yr): 61 ± 11.9

Gender: 131/246 (F)

Advanced cancer patients (mixed cancer sites)

Needs Assessment of Advanced Cancer Patients (NA-ACP): 7 domains and 132 items

Items of highest unmet needs by each domain:

1) symptom (15–22%)’ “dealing with loss of appetite” (22%); 2) psychological (39–40%), “coping with fears about the caner spreading” (40%) and “coping with frustration at not being able to do the things you used to do” (40%); 3) daily livings (10–30%), “dealing with doing work around the house” (30%); 4) social (10–13%), “being able to express feeling with friends and/or family” (13%); 5) medical information and communication (31–35%), “getting information about factors, which could influence the course of the cancer” (35%); 6) financial (11–12%), “dealing with concerns about your financial situation” (12%); 7) spiritual (11–15%), “being able to choose the place where you want to die” (15%)

Hong Kong

Outpatients

Questionnaire survey

Sampling: consecutive sampling

Sample size: 198

Age (yr): 53.4 ± 9.74

Gender: 198/198 (F)

Advanced breast cancer patients (stage III/IV)

Chinese version of Supportive Care Needs Survey (SCNS-SF33-C): 4 domains and 33 items: physical and daily living, psychological, sexuality, health system, information and patient support (HSIPS)

Hospital Anxiety and Depression Scale (HADS)

Memorial Symptom Assessment Scale Short-Form (MSAS-SF)

Chinese Patient Satisfaction Questionnaire

Top 10 moderate-to-high unmet needs:

1) “Having one member of hospital staff with whom you can talk to about your concerns” (63.7%); 2) “informed about cancer is under control or diminishing” (61.6%); 3) “Informed about things you can do to get well” (58.6%); 4) “Informed about your test results” (51%); 5) “Given written information” (46.9%); 6) “given information about aspects of managing illness and side-effects at home” (39.9%); 7) “adequately information about the benefits and side-effects of treatments” (39.3%); 8) “given explanations of those tests for which you would like explanations” (36.9%); 9) “being treated like a person” (35.4%); 10) “more choice about cancer specialists” (31.8%)

Australia

Outpatients

Questionnaire survey

Sampling: consecutive sampling

Sample size: 105

Age (yr): (34–85, median 57)

Gender: 105/105(F)

Metastatic breast cancer

Supportive Care Needs Questionnaire (SCNQ): 5 domains and 59 items

Moderate to high unmet needs:

1)Psychological needs (24–41%): “concerns about the worries of those close to you” (41%), “uncertainty about the future” (38%), etc.

2)Information needs (26–41%): “informed about things you can do to help yourself get well” (41%), “one member of hospital staff with whom you can talk” (32%), etc.

3)Physical and daily living needs (25–28%): “pain” (28%), “not being able to do the things you used to” (25%).

France

NR

Questionnaire survey

Sampling: consecutive sampling

Sample size: 201

Age (yr): mean 62

Gender: 146/201 (F)

Metastatic cancer (mixed cancer sites)

Adapted Supportive Care Needs Survey (SCNS): 2 domains and 13 items: psychological dimension, and staff-related dimension. Seven-point scale (1–7): 1 = no need at all, 7 = a total need of help

Unmet needs:

1) psychological needs: “being informed about things you can do to help yourself to get well” (3.83 ± 2.24), etc.

2) staff-related needs: “being informed about your test results as soon as feasible”(3.44 ± 2.27), etc.

Shanghai, China

Inpatients

Questionnaire survey

Sampling: convenience sampling

Sample size: 134

Age (yr): 75.9 ± 10.5

Gender: 62/134 (F)

Advance cancer (mixed cancer sites)

Self-designed questionnaire for needs including 4 parts (26 items) (p. 2656): basic information, quality of life, health care service needs and attitudes towards disease and death

Needs:

1) psychological (47%); 2) daily living (31.3%); 3) spiritual (13.4%); 4) families’ support and accompany (67.9%); 5) needs of volunteers (18.7%); 6) friends’ support and accompany (59%)

Shanghai, China

Home-based

Questionnaire survey

Sampling: random sampling

Sample size: 113

Age (yr): 58.31 ± 8.7

Gender: 54/113 (F)

Advance cancer (cancer sites unclear)

Self-designed questionnaire for needs including (items: not described)

Needs on community wards: (pp. 34–35)

1) treatment care like transfusion, injection (77%); 2) pain (46.9%); 3) constipation, nausea (45.1%); 4) information about disease (37.2%) and rehabilitation (32.7%), psychological like anxiety (38.9%), sense of fear (20.4%).

Needs on home-based care:

1) treatment care like transfusion, injection (71.7%); 2) regular health assessment (43.4%); 3) knowledge about nutrition (31.0%) and care skills (23.9%), pain (36.3%), communication (28.3%).

Needs on day care center:

1) treatment care like transfusion, injection (69%); 2) regular health assessment (42.5%); 3) information and education (28.3%); 4) communication (18.6%); 5) nutrition (38.9%)

Australia

Mixed

Multi-center questionnaire survey

Sampling: unclear

Sample size: 219 patients

NAT: PD-Cs were completed on 120 patients

Age (yr): 66.1 ± 10.7

Gender: 90/198 (F)

Advance cancer (cancer sites unclear)

Needs Assessment Tool: Progressive Disease-Cancer (NAT: PD-C): 4 sections and 18 items (significant)

Overall: 80% had at least one concern

Patients’ well-being:

1) physical:58%

2) daily living: 29%

3) psychological:19%

UK

Home-based

Structured interview survey

Sampling: unclear

Sample size: 90

Age (yr): 71–80 (48.9%)

Gender: 90 (M)

Advance prostate cancer

Adapted Toronto Information Needs Questionnaire (TINQ-BC): 5 domains and 29 items

Unmet needs:

82.2% of the patients need more information:

1) “side effects of treatment” (66.7%);

2) “how to ease side effects of treatment” (64.4%)

USA

Mixed

Questionnaire survey

Sampling: consecutive sampling

Sample size: 296

Age (yr): median 68 (29–96)

Gender: 296 (M)

Advance cancer (mixed cancer sites)

14-item unmet needs questionnaire: 5 domains and 14 items

Unmet needs:

1) physical: 46.1–80%;

2) emotional/social: 10.1–32.5%

3) economic: 6.6–17.3%

4) medical: 12.5–13.6%

5) community: 0–14.3%

UK

Outpatients

Semi-structured interview

Sampling: purposive sampling

Sample size: 20

Age (yr): median 65

Gender: unclear

Advance lung cancer

Semi-structured interview, 40mins- 2 h, tape recorded

Unmet needs:

1) “fear, distress and uncertainty” (p. 41)

2) review “what they had achieved, what still needed to be done before death” (p. 42), and establish themselves as they ‘really’ are (p. 41)

3) “feeling of loss of control” (p. 42)

4) “hard to find hope,” and “questioned their faith wonder why God had not heeded their prayers” (p.42)

Denmark

Inpatients

Semi-structured interview

Sampling: open and strategic sampling

Sample size: 11

Age (yr): median 71.3 (54–86)

Gender: 7/11 (F)

Advance cancer (mixed cancer sites)

Semi-structured interview, 30mins- 1 h

Unmet needs (pp. 177–180):

1) professionals failed to provide patients timely information; 2) patients experienced that “professionals failed to give much help in terms of physical and emotional burden”; 3) Not being regarded as a person: “lack of dialogue with professionals make patients feel neglected and uncertain in the sense of belonging”; 4) autonomy: “patients wanted to be proactive in problem solving, but did not know how to do”; 5) lack of help for their physical and emotional problem

Canada

Outpatients

Semi-structured focus group and in-depth interview

Sampling: unclear

Sample size: 29

Age (yr): mean 75 (59–88)

Gender: 29 (M)

Advance prostate cancer

Semi-structured focus group (90–120 min) and in-depth interview (30–60 min), tape recorded

Unmet needs (pp. 191–193):

1) function issues: pain, fatigue, side (e. g., urinary incontinence issues, loss of sexual function, etc.);

2) information needs of treatment, medication, side effects and health care service etc.;

3) emotional distress: sadness, anger, frustration and regret which associated with some unsolved issues about diagnosis and treatment decisions.

USA

Outpatients

Interview survey

Sampling: unclear

Sample size: 200

Age (yr): 45–64 (54%)

Gender: 62% (F)

Advance cancer (mixed cancer sites)

Structured in-depth telephone interview (30 min)

Unmet needs (p. 762): 1) personal: 6%; 2) instrumental: 43%; 3) administrative: 38%; 4) medical:18%

Hong Kong

Outpatients

Questionnaire survey (longitudinal)

Sampling: consecutive sampling

Sample size: 228

Age (yr): 53.4 ± 9.79

Gender: 228 (F)

Advance breast cancer (stage III/IV)

Supportive Care Needs Survey- Chinese version (SCNS-SF33): 4 domains and 33 items

Hospital Anxiety and Depression scale (HADS): 14 items

Memorial Symptom Assessment Scale Short-form (MSAS-SF)- Chinese version: 32 items

Top 10 Moderate-to-high unmet needs: 1) “Having one member of staff with whom you can talk to about all aspects of your condition” (64.5%), 2) “Being informed about cancer which is under control” (60.4%), 3) “Being informed about things you can do to help yourself to get well” (57.4%), 4) “Being informed about your test results as soon as feasible” (50.8%), 5) “Being given written information about the important aspects of your care” (42.3%), 6) “Being adequately informed about the benefits and side effects of treatments before you choose to have them” (42.3%), 7) “Being given explanations of those tests for which you would like explanations” (37.6%), 8) “Being treated like a person not just another case” (34.5%), 9) “Being given information about aspects of managing your illness and side effects at home” (34.2%), 10) “More choice about which cancer specialists you see” (30.5%).

Region

Setting

Study Design

Participants

Diagnosis

Data Collection Method/ Instrument

Netherlands

Home-based

Questionnaire survey

Sampling: unclear?

Sample size: 81

Age (yr): mean 54y (28-78y)

Gender: 30/76 (F)

Informal caregivers of mixed advanced cancer patients (distant metastasis)

Problems and Needs in Palliative Care questionnaire-caregiver form (PNPC-c): 67 items

Unmet needs (top 10): 1) “knowing physical signs what I should notice” (25%), 2) “lacking of information in writing” (23%); 3) “fear of an unpredictable future” (22%), 4) “difficulty in coordinating the care of different professionals” (22%), 5) “difficulty in getting access to help from agencies/professional organizations” (22%); 6) “difficulty in getting a second opinion from another doctor” (21%), 7) “how I should handle the patient’s pain” (21%), 8) “extra expenditure because of the disease” (17%), 9) “insufficient adjustment of hospital care to the home situation” (17%), 10) “the possibility to choosing another care provider” (14%)

Information needs: information on 1) “the physical problems” (69%), 2) “expectations for the future” (59%), 3) “the possibilities of treatment and side effects” (52%); 4) “euthanasia” (41%); 5) “cause on cancer”(39%), 6) “on nourishment” (37%); 7) “on places and agency that provide help” (30%); 8) “aids to help me” (29%)

South Korea

NR

Questionnaire survey (retrospective)

Sampling: unclear?

Sample size: 1662

Age (yr): not report

Gender: 1099/1662 (F)

Informal caregivers of mixed advanced cancer patients (patients died)

Self-designed needs questionnaire: including 5 domains: 1) symptom management, 2) psychosocial support, 3) financial support, (4) community support, including volunteer assistance, and 5) religious support.. (p.701)

Unmet needs (p. 703): 1) symptom support (42.8%), 2) financial support (42.7%), 3) psychological support (20.6%), 4) community support (19.7%), and 5) religious support (3.8%)

Taiwan

Mixed

Questionnaire survey

Sampling: consecutive sampling

Sample size: 166

Age (yr): 49.6 ± 12.0

Gender: 71/166 (F)

Informal caregivers of advanced lung cancer patients

1) Partners and Caregivers supportive care needs survey (SCNS-P&C):6 domains and 44 items

2) Numerical rating scale (NRS) (0–10, 0 = no fatigue or sleep disturbance, 10 = worst imaginable): fatigue or sleep disturbance

Top 10 unmet needs: 1) “Managing concerns about the cancer coming back” (78.3%); 2) “Addressing fears about the person with cancer’s physical or mental deterioration” (72.3%); 3) “Ensuring there is an ongoing case manager to coordinate services for the person with cancer” (71.1%); 4) “Accessing information on what the person with cancer’s physical needs are likely to be” (68.7%); 5) “Accessing information about the person with cancer’s prognosis, or likely outcome” (65.1%); 6) “Accessing information about the benefits and side-effects of treatments so you can participate in decision making about the person with cancer’s treatment” (62.1%); 7) “Obtaining adequate pain control for the person with cancer” (61.5%); 8) “Finding out about financial support and government benefits for you and/or the person with cancer” (60.9%); 9) “Understanding the experience of the person with cancer” (58.5%); 10) “Reducing stress in the person with cancer’s life” (56.1%)

Shanghai, China

Inpatients

Questionnaire survey

Sampling: convenience sampling

Sample size: 649

Age (yr): 49.2 ± 13.18

Gender: 369/649 (F)

Family caregivers of mixed advanced cancer patients (stage IV)

Self-designed needs questionnaire: 7 dimensions and 36 items (p. 567)

Cronbach’s α = 0.902

Scores of Needs (p. 567):

1) “maintaining health” (3.48 ± 1.04); 2) “support from professionals” (4.11 ± 0.84); 3) “knowledge about disease and treatment” (4.37 ± 0.81); 4) “funeral support” (2.85 ± 1.30); 5) “information for hospice care” (3.01 ± 1.14); 6) “psychological support from patients” (3.08 ± 1.18); 7) “symptom control for patients” (4.26 ± 0.95); 8) overall (3.6 ± 0.75)

Japan

Inpatients

Questionnaire survey

Sampling: convenience sampling

Sample size: 66

Age (yr): 55.6 ± 12.1

Gender: 46/66 (F)

Family caregivers of mixed advanced cancer patients

Self-designed information needs questionnaire: 7 items

Information needs (p. 32):

Disease-related Information

1) Information on disease (54, 82%); 2) Information on treatment (48, 73%); 3) Information on prognosis (43,65%)

Care-related information

1) Patients’ physical care (40, 61%); 2) Patients’ psychological care (33,56%); 3) Family care (31,47%)

USA

NR

Questionnaire survey

Sampling: convenience sampling

Sample size: 159

Age (yr): 50.28 ± 12.91

Gender: 159/159 (F)

Informal female caregivers of mixed advanced cancer patients

Self-designed Cancer Caregiver Needs Checklist: 9 domains and 104 items

Information needs (p. 269):

1) Disease/ medical (0.59 ± 0.29); 2) Caregiving (0.56 ± 0.27); 3) Relating with the patient (0.59 ± 0.31)

4) Caregiver well-being (0.41 ± 0.30); 5) Financial/legal (0.28 ± 0.35); 6) Family and close others (0.42 ± 0.33)

7) Future outlook (0.42 ± 0.39); 8) Dying (0.48 ± 0.33); 9) Spirituality (0.19 ± 0.27)

USA

NR

Qualitative study (focus group)

Sample size: 32

Active caregivers (n = 17)

Bereaved caregivers (n = 15)

Sampling: unclear

Informal caregivers of mixed advanced cancer patients (metastasis)

Semi-structured focus groups interview (audiotaped) and constant-comparative for analysis

Unmet needs (p. 247):

1) Medical care such as provision of information, coordination of care; 2) quality of life (caregiver well-being including physical and emotional, caregivers roles); 3) help from others (practical assistance and social support) 4) unsolicited needs such as non-professional information needs, impacts on their family

India

Mixed

Interview survey with semi-structured questionnaire

Sampling: unclear

Sample size: 56

Age (yr): 36 caregivers aged 30–60

Gender: unclear

Family caregivers 3–6 months after the death of patients (cancer sites unclear)

Semi-structured questionnaire

Unmet needs (pp. 192–193):

1) Medical needs: “lack of home -care services” (17%); “training in “care giving”” (71%); “need for an admission to a hospice/hospital” (40%). 2) Psychological needs: 1) “felling of tense” (39%); 2) “anxious” (17%); 3) “depressed” (32%); 3) Financial needs: “need financial help from other families or friends” (55.6%); 4) Information needs: “help in communicating disease status and prognosis with their loved one” (35%); 5) Social needs: “lack of social life” (71.4%); “affected the relationships and interactions with others” (42.9%)

USA

Home-based

Questionnaire survey

Sampling: unclear

Sample size: 110

Age (yr): 64.7 ± 14.6

Gender: 83/110 (F)

Informal caregivers of mixed advanced cancer patients

Spiritual Needs Inventory (SNI): 17 items

Top 10 unmet needs of each item:

1) “be with family” (20%); 2) “laugh”(16%); 3) “be with friends”(12%); 4) “see smiles of others”(12%), 5) ‘think happy thoughts’(11%), 6) “be around children” (10%); 7) “go to religious services” (10%); 8) “talk about day-to-day things” (8%); 9) “read inspirational materials” (8%), 10) “talk with someone about spiritual issues” (6%)

USA

Mixed

Qualitative study (semi-structured in-depth interview and focus group)

Sampling: unclear

Sample size: 19 (16 wives, 3 children)

Gender: unclear

Family caregivers of advanced prostate cancer

Semi-structured in-depth interview (40–90 min) and focus group (60–90 min), audiotaped

Needs (pp. 167–168):

1) informational needs regarding disease, treatment, side effects and care services, etc.

2) “uncertainty about the future”

3) caregiver burden including supporting the physical, functional and emotions needs of patients

4) “practical assistance needs like household chores”

5) “feelings of isolation as lack of social activities”

Taiwan

Home-based

Qualitative study (in-depth interview)

Sampling: consecutive sampling

Sample size: 44

Family caregivers of terminal cancer patients (mixed cancer sites)

In-depth interview with open-ended questionnaire (30–40 min) (tape recorded)

Needs: 1) Emotional support from families and professionals including listening, encouragement, etc. 2) Information needs regarding “symptom management, nutrition, concerns about dying, medication and nursing aids” (p. 633).

Shanghai, China

Inpatients

Questionnaire survey

Sampling: convenience sampling

Sample size: 89

Age (yr): (23–72, median 52.1)

Gender: 58/89 (F)

Family caregivers of advanced cancer patients (cancer sites unclear)

Self-designed questionnaire (unclear items)

Needs (p. 19):

1) prognosis of disease (100%); 2) help to realize patient’s wishes(100%); 3) continuous support after discharge from hospital(100%); 4) knowledge of self-care(100%); 5) relevant knowledge of disease(98.9%); 6) regular counseling service (84.3%); 7) emotional support(69.7%); 8) pain management of patients(59.6%); 9) accompany (50.6%)

Region

Setting

Study Design

Participants

Diagnosis

Data Collection Method/ Instrument & Findings

Bangladesh

Outpatients

Qualitative study

(in-depth interview)

Sampling: convenience sampling

Sample size: 20

Patients (n = 3), Family members (n = 9), Clinical staffs (n = 8)

Advanced breast cancer and family members

Semi-structured in-depth interview with open-ended questions (tape recorded) and qualitative description for analysis

Needs (pp. 147–148): 1) “social needs of patients and families” due to financial impact, economic uncertainty and needs for social security;

2) “psychological and spiritual needs of patients and families”: feeling of sadness, anxiety, anger, abandonment, fear and hopeless;

3) “need for information among patients and families”.

4) “Access to and receipt of care from professional systems and providers”

Canada

Outpatients

Questionnaire survey

Sampling: unclear

Sample size: 144

Patients: n = 71

Caregivers: n = 73

Age (yr):

Patients: unclear

Caregivers: unclear

Gender: unclear

Mixed advanced cancer patients and their caregivers

Advanced Cancer Information Needs Survey (ACIN): 22 items

Needs for patients:

1) “pain control” (75%), 2) “weakness and fatigue” (58%), 3) “shortness of breath” (52%), 4) “what cause cancer” (48%), 5) “home care services” (46%), 6) “communicating with loved ones” (46%)

Needs for caregivers:

1) “pain control” (82%), 2) “weakness and fatigue” (66%), 3) “home care services” (58%), 3) “what cause cancer” (53%), 4) “how can we prevent cancer” (58%), 5) “why are some cancers not curable” (56%)

USA

Mixed

Questionnaire survey

Sampling: consecutive sampling

Sample size: 100

Age (yr): (27–85, median 62)

Gender: unclear

Informal caregivers of advanced cancer patients (cancer sites unclear)

The Family Inventory of Needs (FIN): 20 items

Caregiver’s Perception of Patients’ Unmet Needs (PPUN): 14 items

Perception of Patients’ Unmet Needs (PPUN):

1) physical (80%), 2) nutritional (51%), 3) daily living (44%), 4) emotional (33%).

Caregiver unmet needs (FIN):

1) “having information about what to do for the patient at home” (37%); 2) “knowing when to expect symptoms to occur” (31%); 3) “being told about people who could help with problems” (26%); 4) “knowing the probable outcome of the patient’s illness” (26%)

Shanghai, China

Home-based

Questionnaire survey

Sampling: convenience sampling

Sample size: 400

Age (yr): Patients:60.61 ± 12.67 Caregivers: 56.04 ± 12.57

Gender: Patients:63/115(F) Caregivers:29/113(F)

Mixed cancer patients at stage III/IV and their caregivers

Self-designed needs questionnaire for advanced cancer patients and their caregivers

Needs for patients (pp. 30–31):

1) psychological: families’ understanding and support(96.5%), etc. 2) Physical care: information of treatment, rehabilitation (80.9%), etc. 3) Social: peer activities and support (54.8%), etc.

Needs for caregivers (p. 38):

1) psychological: communication with families and professionals (76.1%), etc. 2) social: information about treatment and prognosis(81.4%) etc. 3) educational: medication guidance(80.5%) etc.

Shanghai, China

Inpatients

Questionnaire survey

Sampling: unclear

Sample size: 42 (42 patients and 42 family caregivers)

Age (yr): Patients:72.9 ± 11.6 Caregivers: 55.9 ± 13.45

Gender: Patients:18/42 (F) Caregivers:23/42 (F)

Mixed advanced cancer patients and their caregivers

Self-designed needs questionnaire for advanced cancer patients and their caregivers [63]

Needs for patients (p. 2387):

1) “families’ understanding and support” (2.43 ± 0.59); 2) “relieving constipation” (2.38 ± 0.62)

3) “psychological support for caregivers after the death of themselves” (2.36 ± 0.66); 4) “pain assessment” (2.33 ± 0.61); 5) “pain management” (2.31 ± 0.64); 6) “improving appetite” (2.31 ± 0.6)

Needs for caregivers:

1) “dietary and nutrition” (2.38 ± 0.66); 2) “guidance about how to help patients do activities” (2.38 ± 0.66); 3) “pain assessment” (2.38 ± 0.73); 4) “communication between families and professionals” (2.36 ± 0.58); 5) “information about treatment and prognosis” (2.33 ± 0.65)