Table 2 Overview of outcomes and outcome measures evaluated in people with chronic obstructive pulmonary disease or interstitial lung diseases and their family and/or friend caregivers

Knowledge about palliative care

PaCKS [45]

- Self-reported questionnaire with 13 items which are true or false. A broad range of topics are assessed, including goals, target population and timing of palliative care, as well as symptoms and problems that palliative care addresses

- For each statement, “True”, “False” and “I don’t know” options are provided, and a mark is given for each correct answer

- Scores range from 0/13 to 13/13, with higher scores indicating higher knowledge

Not applicable

Attitude towards palliative care referral

“Would you like (your loved one) to be referred to a specialist palliative care team at this time?” [46]

- “Would you like to be referred to a specialist palliative care team at this time?” and “Would you like your loved one to be referred to a specialist palliative care team at this time?” will be asked to people with COPD or ILD and their family and/or friend caregivers, respectively

- Possible answers are “Yes”, “No” or “Don’t know”

Not applicable

“Would you like (your loved one) to be referred to a specialist palliative care team if your (your loved one’) health deteriorates?”

- “Would you like to be referred to a specialist palliative care team if your health deteriorates?” and “Would you like your loved one to be referred to a specialist palliative care team if your loved one’ health deteriorates?” will be asked to people with COPD or ILD and their family and/or friend caregivers, respectively who do not answer "Yes" to the previous question

- Possible answers are “Yes”, “No” or “Don’t know”

Not applicable

Pain

“Do you feel pain?”

Pain charts [47] and VAS [48, 49]

- Participants will be asked about pain perception with a closed question: “Do you feel pain?”

- In affirmative cases, pain charts and VAS will be used to identify its location and to measure its intensity, respectively

- Scores will be recorded on a 10 centimeters (cm) line that represents a continuum between “no pain” and “worst pain”

VAS

-1.37 cm

Dyspnoea

mMRC [50, 51]

- 5-point scale graded from 0 (“No breathlessness except on strenuous exercise”) to 4 (“Too breathless to leave the house or breathless when dressing or undressing”). Higher scores indicate greater dyspnoea severity on daily activities

-1 grade

Fatigue

FACIT-FS [52, 53]

- 13-item questionnaire assessing tiredness, weakness, listlessness, lack of energy, and their impact on HRQoL

- Each item is rated from 0 (“Not at all”) to 4 (“Very much”). Total score ranges from 0 to 52. Higher scores indicate less fatigue

 + 4.7 points

Cough

LCQ [54, 55]

- 19-item questionnaire containing three domains: physical, psychological and social

- Each item is rated from 1 to 7. Final score ranges from 3 to 21. Higher scores indicate weaker influence of cough on quality of life

 + 1.3 points

Anxiety and depression

HADS [56, 57]

- 14 multiple-choice items divided into 7 item subscales for anxiety (HADS-A) and depression (HADS-D)

- Scores in each subscale range from 0 to 21. Higher scores indicate greater levels of anxiety and/or depression. Clinically significant anxiety or depression are interpreted by scores ≥ 8

HADS-A

-1.5 points

HADS-D

-1.5 points

Disease impact

CAT [58, 59]

- 8-item questionnaire which addresses cough, sputum, chest tightness, dyspnoea, home daily activities, confidence leaving home, sleep and energy levels in a 6-point scale rated from 0 to 5

- Score ranges from 0 to 40. Higher scores indicate more severe impairment on health status. A score of more than 20 indicates high impact

-2 points

HRQoL

SGRQ [60, 61]

- 50-item questionnaire which evaluates three different domains contributing to overall health, daily life, and perceived well-being: symptoms, activity and impact

- A score in each domain and a total score are calculated and weighted, ranging from 0 to 100. Higher scores indicate worse HRQoL

-4 points

Needs

SNAP [62, 63]

- 15 questions with the format: “Do you need more support with…” (e.g., “Do you need more support with managing your symptoms?”)

- For each statement, “No”, “A little more” and “Quite a bit more” options are provided to identify the domains in need of support

- There is an optional additional open-ended question to capture “anything else” not already covered

- The final question refers to the caregiver needs: “Does a family member or friend who helps you need more support?”

Not applicable

CSNAT [64, 65]

- 14 questions covering caregivers’ broad support domains which fall into two distinct groups: support that enable them to provide care and more direct personal support for themselves

- All questions follow the format: “Do you need more support with…” (e.g., “Do you need more support with knowing what to expect in the future?”)

- For each question, “No”, “A little more”, “Quite a bit more” and “Very much more” options are provided to identify support needed within any of the domains

- There is an optional additional open-ended question to capture “anything else” not already covered

Not applicable

Functional performance

LCADL [66, 67]

- 15 activities of daily living organized in four domains: self-care, domestic, physical and leisure

- Each item is rated from 0 (“I wouldn’t do it anyway”) to 5 (“I need someone else to do this”), except for one additional question on global impact with “A lot”, “A little” and “Not at all” as answer choices

- Final score ranges from 0 to 75. Higher scores indicate greater functional limitation

LCADL

-3 points

LCADL % of total

-4 points

Functional capacity

6-MWT [68, 69]

- Evaluates the distance walked at a fast pace during 6 min in a 30 meters (m) corridor

 + 30 m

Peripheral muscle strength

Quadriceps strength

1-RM [37, 70]

Handgrip strength

HHD [71, 72]

- Quadriceps strength, 1-RM: determines the greatest amount of weight in kilogram (kg) that the participant could move in a double leg extension manoeuvre (isotonic strength)

- Handgrip strength, HHD: measures the maximum isometric strength of the hand and forearm muscles at the dominant side in kg

Quadriceps

 + 5.7 kg, 26.9%

Handgrip

Not available

Balance

Brief-BESTest [73, 74]

- 8-item scale evaluating 6 domains contributing to postural control in standing and walking: biomechanical constraints, stability limits/verticality, transitions/anticipatory postural adjustments, reactive postural control, sensory orientation and stability gait

- Each domain is evaluated with a test scored from 0 (severe impairment) to 3 (no impairment), with a maximum of 24. Higher scores indicate better balance performance

 + 3 points

Knowledge about COPD

BCKD [18]

- 65 statements divided in 13 topics, each with a stem; these topics cover epidemiology and physiology, aetiology, common symptoms, breathlessness, phlegm, chest infections, exercise, smoking, immunization, inhaled bronchodilators, antibiotics, and oral/inhaled steroids

- For each statement, “True”, “False” and “I don’t know” options are provided, and a mark is given for each correct answer

- Total score corresponds to the percentage of correct answers

Not available

Burden of providing care

ZBI [75]

- 22-item questionnaire addressing impact of caring experience in several domains: health and wellbeing, personal and social life, and finances

- Each question has five response options rated from 0 (“Never”) to 4 (“Almost always”), except for the final question on global burden, rated from 0 (“Not at all”) to 4 (“Extremely”). Final score ranges from 0 to 88. Higher scores indicate greater burden. A score of more than 24 indicates high burden

Not available

Adherence

-

- Number of attended exercise sessions and education and psychosocial support sessions

Not applicable

Adverse events

-

- Occurrence of adverse events during PR

Not applicable

Referral to a specialist palliative care team

-

- Number of people with COPD or ILD referred to a specialist palliative care team

Not applicable