Thinking Forward: Future-oriented Thinking among Patients with Tobacco-associated Thoracic Diseases and Their Surrogates

Hart, Joanna L.; Pflug, Emily; Madden, Vanessa; Halpern, Scott D.

doi:10.1164/rccm.201505-0882oc

Cited by 10 publications

(9 citation statements)

References 71 publications

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“…Increased trust was associated with longer consultations, physician verbal behaviour (such as exploring the impact of the condition or illness on the patient) [ 130 ] and continuity of care. [ 47 , 59 , 93 ]. The importance of ongoing relationships and the ability to reassess changing priorities were highlighted in several studies [ 47 , 103 ].…”

Section: Resultsmentioning

confidence: 99%

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

et al. 2018

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BackgroundHealth care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0853-9) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

et al. 2018

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“…210 Trust is also facilitated by continuity of care. 68,113,174 However, a long-standing relationship with a clinician may lead a patient to assume that the clinician is aware of his or her values, 159 whereas evidence suggests that there is often a mismatch between patients' and clinicians' views. For example, a qualitative study 179 investigated alignment of goals between people with multimorbidity, their family carers and HCPs, and found that, although there were some common goals (such as maintaining independence), there was also a significant amount of goal divergence.…”

Section: Developing Relationshipsmentioning

confidence: 99%

“…Overview of programme theoryProgramme theorySupporting evidence CMO 1: systems that enable HSCPs to develop relationships with patients and carers, and with each other, and that allow them to understand and assess individual needs and patient and carer capacity to access and use care, will activate trust and engagement leading to better outcomes for patients and carers17,63,[66][67][68]84,104,105,107,110,113,[117][118][119]144,[155][156][157]160,[162][163][164][165]168,171,172,174,175,[177][178][179][181][182][183][184][185]188,189,192,[196][197][198][199][200]203 See Report Supplementary Material 1 CMO 2: systems that are organised to support and prioritise SDM will lead to HSCPs feeling supported (and equipped) to engage in SDM, resulting in SDM becoming part of the culture of care Examples of supporting evidence from ...…”

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confidence: 99%

Supporting shared decision-making for older people with multiple health and social care needs: a realist synthesis

Bunn

Goodman

Russell

et al. 2018

Health Serv Deliv Res

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BackgroundHealth-care systems are increasingly moving towards more integrated approaches. Shared decision-making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; this is particularly the case for older people with complex needs.ObjectivesTo provide a context-relevant understanding of how models to facilitate SDM might work for older people with multiple health and care needs and how they might be applied to integrated care models.DesignRealist synthesis following Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards.ParticipantsTwenty-four stakeholders took part in interviews.Data sourcesElectronic databases including MEDLINE (via PubMed), The Cochrane Library, Scopus, Google and Google Scholar (Google Inc., Mountain View, CA, USA). Lateral searches were also carried out. All types of evidence were included.Review methodsIterative stakeholder-driven, three-stage approach, involving (1) scoping of the literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, (2) systematic searches for evidence to test and develop the theories and (3) validation of programme theory/ies with stakeholders (n = 11).ResultsWe included 88 papers, of which 29 focused on older people or people with complex needs. We identified four theories (context–mechanism–outcome configurations) that together provide an account of what needs to be in place for SDM to work for older people with complex needs: understanding and assessing patient and carer values and capacity to access and use care; organising systems to support and prioritise SDM; supporting and preparing patients and family carers to engage in SDM; and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that create trust between those involved, allow service users to feel that they are respected and understood, and engender confidence to engage in SDM.LimitationsThere is a lack of evidence on interventions to promote SDM in older people with complex needs or on interprofessional approaches to SDM.ConclusionsModels of SDM for older people with complex health and care needs should be conceptualised as a series of conversations that patients, and their family carers, may have with a variety of different health and care professionals. To embed SDM in practice requires a shift from a biomedical focus to a more person-centred ethos. Service providers are likely to need support, both in terms of the way services are organised and delivered and in terms of their own continuing professional development. Older people with complex needs may need support to engage in SDM. How this support is best provided needs further exploration, although face-to-face interactions and ongoing patient–professional relationships are key.Future workThere is a need for further work to establish how organisational structures can be better aligned to meet the requirements of older people with complex needs. This includes a need to define and evaluate the contribution that different members of health and care teams can make to SDM for older people with complex health and care needs.Study registrationThis study is registered as PROSPERO CRD42016039013.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Doing so necessitates confronting the possibilities of increasing illness burden or death. [2][3][4][5][6] Barriers to forming accurate expectations include tendencies to display present bias (ie, to overvalue the present), 7,8 difficulty imagining unfamiliar health states, 9 lack of coping skills, and preferences for receiving positive information. [10][11][12] Without necessary support, patients with serious illnesses are likely to inaccurately anticipate their future health or avoid information about possible poor health outcomes.…”

Section: Introductionmentioning

confidence: 99%

Accuracy of Expected Symptoms and Subsequent Quality of Life Measures Among Adults With COPD

Hart,

Summer,

Ogunduyile

et al. 2023

JAMA Netw Open

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ImportancePatients’ expectations for future health guide their decisions and enable them to prepare, adapt, and cope. However, little is known about how inaccurate expectations may affect patients’ illness outcomes.ObjectiveTo assess the association between patients’ expectation inaccuracies and health-related quality of life.Design, Setting, and ParticipantsThis cohort study of patients with severe chronic obstructive pulmonary disease (COPD) was conducted from 2017 to 2021, which included a 24-month follow-up period. Eligible participants received outpatient primary care at pulmonary clinics of a single large US health system. Data were analyzed between 2021 and 2023.ExposureExpectation accuracy, measured by comparing patients’ self-reported expectations of their symptom burden with their actual physical and emotional symptoms 3, 12, and 24 months in the future.Main Outcome and MeasureHealth-related quality of life, measured by the St George’s Respiratory Questionnaire-COPD at 3, 12, and 24 months.ResultsA total of 207 participants were included (median age, 65.5 years [range, 42.0-86.0 years]; 120 women [58.0%]; 118 Black [57.0%], 79 White [38.2%]). The consent rate among approached patients was 80.0%. Most patients reported no or only limited discussions of future health and symptom burdens with their clinicians. Across physical and emotional symptoms and all 3 time points, patients’ expectations were more optimistic than their experiences. There were no consistent patterns of measured demographic or behavioral characteristics associated with expectation accuracy. Regression models revealed that overoptimistic expectations of future burdens of dyspnea (linear regression estimate, 4.68; 95% CI, 2.68 to 6.68) and negative emotions (linear regression estimate, −3.04; 95% CI, −4.78 to 1.29) were associated with lower health-related quality of life at 3 months after adjustment for baseline health-related quality of life, forced expiratory volume over 1 second, and interval clinical events (P &lt; .001 for both). Similar patterns were observed at 12 months (dyspnea: linear regression estimate, 2.41; 95% CI, 0.45 to 4.37) and 24 months (negative emotions: linear regression estimate, −2.39; 95% CI, −4.67 to 0.12; dyspnea: linear regression estimate, 3.21; 95% CI, 0.82 to 5.60), although there was no statistically significant association between expectation of negative emotions and quality of life at 12 months.Conclusions and RelevanceIn this cohort study of patients with COPD, we found that patients are overoptimistic in their expectations about future negative symptom burdens, and such inaccuracies were independently associated with worse well-being over time. Developing and implementing strategies to improve patients’ symptom expectations may improve patient-centered outcomes.

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Thinking Forward: Future-oriented Thinking among Patients with Tobacco-associated Thoracic Diseases and Their Surrogates

Cited by 10 publications

References 71 publications

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis

Supporting shared decision-making for older people with multiple health and social care needs: a realist synthesis

Accuracy of Expected Symptoms and Subsequent Quality of Life Measures Among Adults With COPD

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