Table 3 Outcomes of quantitative studies
Outcome: Overall burden & breathlessness | |||
Studies | Measures | Populations | Results |
Celik et al. 2022 [48] | ZBI ESAS | 98 cancer carers | Breathlessness mean score were sig. higher in with higher carer burden (p < 0.05) |
Fernandez-Garcia et al. 2021 [49] | ZBI mMRC | 91 COPD carers | Degree of breathlessness 3–4 [OR = 4.7 (95% CI = 1.7–13.2); p = 0.003] were independently related to carer burden 92.3% perceived an overburden |
Krug et al. 2016 [50] | BSFC QLQ-C15-PAL | 58 carers of patients on palliative station Follow-up: 6 months | Influence on carer burden: Positive changes in carer burden (t1 and t3) and breathlessness (t1 and t2) imply an increase in carer burden and a higher severity of breathlessness (breathlessness (t2-t1) reg. coefficient: 0.05, 95% CL [0.01, 0.09]; p: 0.03) |
Malik et al. 2013 [13] | ZBI mBorg Scale | 101 (50 lung cancer, 51 heart failure) carers | Mean burden scores were similar in both carer groups, and severe burden (score of > 16 on the ZBI-12) were reported from: - lung cancer carer 30% (95% CI = 17–43%) - heart failure carer 19% (95% CI = 8–30%) No association between burden and patients’ diagnosis or severity of breathlessness |
Manivannan et al. 2023 [51] | ZBI EORTEC QLQ C15PAL | 2022 cancer carers | Correlations: Small sig. positive between EORTEC QLQ C15 PAL symptom score (breathlessness, insomnia etc.) and ZBI: Values between breathlessness and ZBI: Spermans correlation Rho 0.154 (95% Cl 0.018—0.284; p = 0.022) |
Tang et al. 2011 [52] | CBS MRCD | 112 silicosis carers | Carer burden was significantly correlated with severity of breathlessness (r = .359, p < .0001) |
Takao et al. 2023 [53] | CCI Breathlessness: a scale ranging from 0 (not at all) to 4 (very acute) | 670 bereaved family members: Subgroup of 86 carers of terminal cancer and dementia patients and 587 without perceived dementia | The carer burden was significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family carers of terminal cancer patients with dementia Breathlessness (OR, 1.67, CI 1.10–2.55, p: 0.015) was contributing factor for carer burden when perceived dementia, and (OR 1.14, Cl 0.95–1.37, p: 0.153) for carer burden without perceived dementia |
Jesus et al. 2022 [54] | CBI mMRC | 54 carers of patients with LTOT Carers ‘ quality of life: EQ-5D; European Quality of life index Breathlessness: mMRC | Univariate linear regression: total score of increased carer burden was correlated with higher breathlessness (p = 0.006) r. = 0.369 CBI dimension: Time-dependence burden: correlated with higher limitation due to breathlessness (p = 0.01) r. = 0.335 Development Burden: correlated with higher limitation due to breathlessness (p = 0.02) r. 0.309 Increased physical and emotional burden correlated with higher limitation due to breathlessness (p = 0.007 and 0.01) r. = 0.363 and r. = 0.333 Social burden: (p = 0.24) r. = 0.162, (not significant) Increased total score of carer burden was correlated with worse quality of life for carers |
Outcome: psychological distress & breathlessness | |||
Studies | Measures | Populations | Results |
Al-Gamal et al. 2013 [55] | HADS D-12 | 67 COPD carers | Positive correlation (r = 0.307, p < 0.05, r = 0.286, p < 0.05) |
Bernabeu-Mora et al. 2016 [56] | Goldberg Test MRC | 84 COPD carers 3 months: from hospitalisation due to exacerbation | Depressive symptoms: Baseline: 45 carers At 3 months: 32 carers Predictors of carers depression: • Spousal caregiving OR 2.65 (95% Cl 0.85–8.26; p < 0.10) • breathlessness OR 4.10 (95% CI 1.11–15.22; p < 0.05), • severe airflow limitation OR 3.88 (95% CI 1.42–10.65; p < 0.05) R2 = 24.10% |
Freeman et al. 2016 [57] | Depression rating scale and own classification | NA (6.655 patients and carers) from interRAI Palliative Care (PC) (2006 – 2011) | 25.2% (n = 1.580) carers exhibit signs of distress, carers of breathlessness patients were more likely to it (p = 0.005) 24.6% (n = 716) from 1.580 of carers exhibit signs of distress when breathlessness in present while performing activities and 29.1% (n = 312) while breathlessness in present at rest Log. Regression: Significant relationship between care unit (patient and carer) distress was evident showing that persons with breathlessness were at increased risk for care unit distress (OR 1.18; 95% CI 1.07–1.30; p = 0.001) Breathlessness remained significantly associated with care unit distress (OR 1.18; 95% CI 1.06–1.32; p = 0.003) when controlling for client level characteristics including age, gender, diagnosis, and prognosis |
Granados-Santiago et al. 2023 [58] | HADS mBorg Scale | 70 COPD carers Divided into two groups based on carers’ burden (35/35) | Anxiety and depression for carers HADS: 24.83 SD 10.11 vs. 15.6 SD 8.74 |
Malik et al. 2013 [13] | HADS mBorg Scale | 101 (50 lung cancer, 51 heart failure) carers | Anxiety: Lung cancer carers: mean 8.2 (SD 4.4) Heart failure carers: mean 7.7 (SD 4.1) Depression: Lung cancer carers: mean 5.1 (SD 3.6) Heart failure carers: mean 4.6 (SD 3.5) Overall anxiety score was higher in both groups compared to overall depression score Carers depression and looking after more breathless patients is associated with fewer positive caring experiences (R2 = 0.15; F = 4.4; p = 0.04) |
Mi et al. 2017 [59] | HADS CRQ | 113 COPD carers | Prevalence of carer distress and anxiety (46% and 23%) No association between breathlessness and carers HADS values |
Mi et al. 2018 [60] | HADS MRC | 117 COPD carers | Most bothersome symptom were breathlessness and fatigue |
Oechsle et al. 2013 [61] | PHQ-9, GAD-7 MSAS | 33 cancer carers | Significant positive correlation between: Carers’ depression and total breathlessness (r = 0.37; p = 0.036) |
Seow et al. 2021 [62] | Distress: Yes/No Breathlessness: Yes/No | NA | Presence of breathlessness is associated with distress (OR = 1.19, 95% CL 1.18–1.2) |
Outcome: quality of life & breathlessness | |||
Studies | Measures | Populations | Results |
Lyons et al. 2020 [63] | SF-36v2 SOBQ | 109 lung cancer carers (after 12 month 68 carers) Over 12 months | Carers reported significantly poorer mental health when they were women, cared for younger patients, and cared for patients who were women (in relation to pain and breathlessness): χ2 (1, n = 109) = 10.65, p < .01) Greater incongruence in patient’s breathlessness and pain (between carer and patient rating) was significantly associated with worse physical health for carers |
Tang et al. 2011 [52] | MRCD SF-36 | 112 silicosis carers | Physical component summary score (PCS) (SF-36) PCS: Mean (SD) 54.4 (10.0) Poorer PCS was significantly correlated with patients’ severity of breathlessness (r = .223, p = 0.019), Mental component summary score (MCS) (SF-36) MCS: Mean (SD) 51.8 (10.1) Poorer MCS was significantly correlated with severity of breathlessness (r = .299, p = 0.001) |
Malik et al. 2013 [13] | SF-36 mBorg Scale | 101 (50 lung cancer, 51 heart failure) carers | Quality of life: similar in both groups (lung cancer carers vs. heart failure carers) |
Moody et al. 2003 [29] | DGRIS The Hospice Quality of Life Index | 163 lung cancer carers | Carers health related Quality of Life (Range 11 to 116): 55.06 (22.10) Factors influencing Carers' Quality of Life: symptom distress, age, educational level, and the patient's breathlessness intensity were significantly related to their perceived quality of life (R2 = .40, p = .02) |
Outcome: coping & breathlessness | |||
Studies | Measures | Populations | Results |
Malik et al. 2013 [13] | Coping style: problem-focused, emotion-focused, dysfunctional-focused mBorg Scale | 101 (50 Lung Cancer, 51 Heart Failure) carers | No difference between groups |
Outcome: use of supportive service & breathlessness | |||
Studies | Measures | Populations | Results |
Yamamoto et al. 2021 [64] | Satisfaction with care provided for terminal breathlessness: Factor Score in Total: Agree 3; slightly agree, 2; and slightly disagree and disagree, 1 n = Sum of the responses to agree and slightly agree | 231 dying cancer carers | Exploratory factor analyses (EFA) for Factor 3 was part of family care: Care for family members (Mean = 2.0, SD = 0.7) - Helping the family easily to understand the patient’s cause of breathlessness: Total n = 159 (68.8%) - Managing breathlessness while respecting families’ preferences: Total n = 150 (64.9%) - Promoting family involvement in the process of care: Total n = 141 (61%) - Listening to families’ anxiety and distress: Total n = 135 (58.4%) |
Yi et al. 2022 [65] | Discreet choice experiment: to elicit preferences and acceptability of breathlessness triggered services (BSs) Markov model Euro-Qol-5 and health and social care costs | 68 carers of COPD, ILD, lung cancer | Carers´ preferences: Differs from patients’ preferences: X2 = 21.77; p < 0.04 Stated a strong preference for BS with home visits from GPs, and social worker and therapists’ involvement Markov model: cost-effectiveness for a 75-years old man over 5 years providing BS is cheaper (over 12 weeks) than usual care and quality of life improved |
Outcome: unmet needs & breathlessness | |||
Studies | Measures | Populations | Results |
Mi et al. 2018 [60] | CSNAT MRC | 117 COPD carers | In multivariate analysis the association between unmet support needs and greater estimation of breathlessness by carers remained when adjusted for patient and carer age and sex (odds ratio 1.250, 95% CI 1.031–1.516), as did younger patient age and greater patient estimation of depression (OR 1.09, 95% CI 1.018–1.167) |