Support needs of patients with COPD: a systematic literature search and narrative review

Introduction: Understanding the breadth of patients’ support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care. Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted. Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent. Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP)

Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.

BACKGROUND: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. AIM: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals. DESIGN: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability. SETTING/PARTICIPANTS: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated. RESULTS: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording. CONCLUSION: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR 291) and Marie Curie Research Grants Scheme (MCRGS-07-16-10

Are within-person Numerical Rating Scale (NRS) ratings of breathlessness 'on average' valid in advanced disease for patients and for patients' informal carers?

INTRODUCTION: The Numerical Rating Scale (NRS) is frequently used to assess patient-reported breathlessness in both a research and clinical context. A subgroup of patients report average breathlessness as worse than their worst breathlessness in the last 24 hours (paradoxical average). The Peak/End rule describes how the most extreme and current breathlessness influence reported average. This study seeks to highlight the existence of a subpopulation who give 'paradoxical averages using the NRS, to characterise this group and to investigate the explanatory relevance of the 'Peak/End' rule. METHODS: Data were collected within mixed method face-to-face interviews for three studies: the Living with Breathlessness Study and the two subprotocols of the Breathlessness Intervention Service phase III randomised controlled trial. Key variables from the three datasets were pooled (n=561), and cases where participants reported a paradoxical average (n=45) were identified. These were compared with non-cases and interview transcripts interrogated. NRS ratings of average breathlessness were assessed for fit to Peak/End rule. RESULTS: Patients in the paradoxical average group had higher Chronic Respiratory Questionnaire physical domain scores on average p=0.042). Peak/End rule analysis showed high positive correlation (Spearman's rho=0.756, p<0.001). CONCLUSIONS: The NRS requires further standardisation with reporting of question order and construction of scale used to enable informed interpretation. The application of the Peak/End rule demonstrates fallibility of NRS-Average as a construct as it is affected by current breathlessness. Measurement of breathlessness is important for both clinical management and research, but standardisation and transparency are required for meaningful results

Support Needs Approach for Patients (SNAP) tool: a validation study.

OBJECTIVES:Patient-identified need is key to delivering holistic, supportive, person-centred care, but we lack tools enabling patients to express what they need to manage life with a long-term condition. The Support Needs Approach for Patients (SNAP) tool was developed to enable patients with advanced chronic obstructive pulmonary disease (COPD) identify and express their unmet support needs to healthcare professionals (HCPs), but its validity is unknown. This study aimed to establish face, content and criterion validity of the SNAP tool. DESIGN:Two-stage mixed-methods study involving patients with advanced COPD and their carers. Stage 1: Face and content validity assessed though focus groups involving patients and carers considering appropriateness, relevance and completeness of the SNAP tool. Data were analysed using conventional content analysis. Stage 2: Content and criterion validity assessed in a postal survey through patient self-completion of the SNAP tool and disease impact measures (Chronic Respiratory Questionnaire, COPD Assessment Test, and Hospital Anxiety and Depression Scale). Content validity assessed using summary statistics; criterion validity via correlations between tool items and impact measures. SETTINGS AND PARTICIPANTS:Two hundred and forty patients and carers participated. Stage 1 patient and informal carer participants were recruited from two primary care practices and Stage 2 patients from 28 practices. Participating practices located in the East of England were recruited via the NIHR Clinical Research Network: Eastern. RESULTS:Patients and carers found the tool patient-friendly and comprehensive, with potential clinical utility. No tool items were redundant. Clear correlations were found between tool items and the majority of items in the impact measures. CONCLUSIONS:The SNAP tool has good face, content and criterion validity. It has potential to support the delivery of holistic, supportive, person-centred care by enabling patients to identify and express their unmet support needs to HCPs

Do patients and carers agree on symptom burden in advanced COPD?

OBJECTIVE: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of COPD in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD. PATIENTS AND METHODS: This was a prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen's kappa determined differences in patient and carer scores and patient-carer agreement, respectively. We identified characteristics associated with incongruence using Spearman's rank correlation and Mann-Whitney U tests. RESULTS: There were no significant differences between group-level patient and carer scores for any symptom. Patient-carer individual-level agreement was moderate for constipation (k=0.423), just below moderate for diarrhea (k=0.393) and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289) and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient-carer relationship, non-cohabitating patients and carers, carer symptoms of anxiety and depression and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD. CONCLUSION: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers

Effects of antiplatelet therapy on stroke risk by brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases: subgroup analyses of the RESTART randomised, open-label trial

Background Findings from the RESTART trial suggest that starting antiplatelet therapy might reduce the risk of recurrent symptomatic intracerebral haemorrhage compared with avoiding antiplatelet therapy. Brain imaging features of intracerebral haemorrhage and cerebral small vessel diseases (such as cerebral microbleeds) are associated with greater risks of recurrent intracerebral haemorrhage. We did subgroup analyses of the RESTART trial to explore whether these brain imaging features modify the effects of antiplatelet therapy

Understanding how the Support Needs Approach for Patients (SNAP) enables identification, expression and discussion of patient support needs: A qualitative study.

Peer reviewed: TrueOBJECTIVES: To identify whether and how the support needs approach for patients enables patients with chronic progressive conditions to identify, express and discuss their unmet support needs. METHODS: Thirteen healthcare professionals trained in the Support Needs Approach for Patients (SNAP), recruited from three pilot sites in the East of England (across primary, community and secondary care) delivered SNAP to 56 patients with the exemplar condition chronic obstructive pulmonary disease over a 4-month period. Healthcare professionals participated in a mid-pilot semi-structured interview (pilot site representatives) and end-of pilot focus group (all healthcare professionals). Twenty patients who received SNAP were interviewed about their experiences (topic-guided). Transcripts analysed using a framework approach. RESULTS: There were differences in how healthcare professionals delivered SNAP and how patients engaged with it; analysing the interaction of these identified a continuum of care (from person-centred to healthcare professional-led) which impacted patient identification and expression of need and resulting responses. When delivered as intended, SNAP operationalised person-centred care enabling patient-led identification, expression and discussion of support needs. DISCUSSION: SNAP addresses the rhetoric within policy, good practice guidance and the person-centred care literature espousing the need to involve patients in identifying their needs and preferences by providing healthcare professionals with a mechanism for achieving holistic person-centred care in everyday practice.Marie Curie Research Grant Scheme ( grant number MCRGs-07-16-10

Support needs of patients with chronic obstructive pulmonary disease (COPD): a systematic literature search and narrative review

Introduction Understanding the breadth of patients’ support needs is important for the delivery of person-centred care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs), however none of these comprehensively outlines the full range of support needs patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centred care. Material and Methods We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data was extracted and a narrative analysis conducted. Results Thirty-one papers were included in the review and thirteen domains (broad areas) of support need identified: (1) understanding COPD, (2) managing symptoms and medication, (3) healthy lifestyle, (4) managing feelings and worries, (5) living positively with COPD, (6) thinking about the future, (7) anxiety and depression, (8) practical support, (9) finance work and housing, (10) families and close relationships, (11) social and recreational life, (12) independence, and (13) navigating services. These thirteen domains of support need were mapped to three of four overarching categories of need commonly used in relevant national strategy documents (ie physical, psychological, and social), however support needs related to the fourth category (spiritual) were notably absent. Conclusions This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence-base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable delivery of person-centred care: the Support Needs Approach for Patients (SNAP).This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR). MF was funded by a National Institute for Health Research Career Development Fellowship (grant number: CDF-2012-05-218)

'I'm fine!': Assertions of lack of support need among patients with chronic obstructive pulmonary disease: A mixed-methods study.

Funder: Marie Curie; FundRef: https://doi.org/10.13039/501100000654OBJECTIVES: To understand how people with Chronic Obstructive Pulmonary Disease (COPD) disavow their support needs and the impact on care. METHODS: Two stage mixed-method design. Stage 1 involved sub-analyses of data from a mixed-method population-based longitudinal study exploring the needs of patients with advanced COPD. Using adapted criteria from mental health research, we identified 21 patients who disavowed their needs from the 235 patient cohort. Qualitative interview transcripts and self-report measures were analysed to compare these patients with the remaining cohort. In stage 2 focus groups (n = 2) with primary healthcare practitioners (n = 9) explored the implications of Stage 1 findings. RESULTS: Patients who disavowed their support needs described non-compliance with symptom management and avoidance of future care planning (qualitative data). Analysis of self-report measures of mental and physical health found this group reported fewer needs than the remaining sample yet wanted more GP contact. The link between risk factors and healthcare professional involvement present in the rest of the sample was missing for these patients. Focus group data suggested practitioners found these patients challenging. DISCUSSION: This study identified patients with COPD who disavow their support needs, but who also desire more GP contact. GPs report finding these patients challenging to engage.NIHR School for Primary Care Researc