The GOAL‐Hēm journey: Shared decision making and patient‐centred outcomes

Roberts, Jonathan C.; Richardson, Sharon; Miles, Moses; Stanley, Justin; Chapman, Chere A T; Denne, Michael; Caicedo, Jorge; Rockwood, Kenneth; Recht, Michael

doi:10.1111/hae.14608

Cited by 10 publications

(13 citation statements)

References 14 publications

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“…Focusing on attainable goals is common in rehabilitation (18) and non-controversially helpful (19). Similar themes – allowing a shared language, and focusing on most meaningful outcomes – were noted in a goal-focused treatment programme for people with haemophilia (20). Understanding mechanisms behind how NIDUS-Family enable goal attainment will support its roll out into post-diagnostic care (21).…”

Section: Discussionmentioning

confidence: 72%

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Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

Wyman,

Butler,

Morgan-Trimmer

et al. 2024

Preprint

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Introduction We report a process evaluation embedded within a UK Randomised Controlled Trial (RCT), which demonstrated that New Interventions for independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over one year. We aimed to test and refine a hypothesised theory of change model delineating key causal assumptions for impact mechanisms. Methods In 2021-22, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We interviewed dyads and their intervention facilitators, purposively selected for diverse follow-up GAS scores and sociodemographic diversity. Matching observational data were collected from intervention session recordings, using a checklist developed to test causal assumptions. We thematically analysed data, then integrated qualitative and quantitative data. Results 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed the intervention, 18 partially completed it, while 12 received none. 47/192 (24.5%) of carers receiving any sessions completed the acceptability questionnaire. 27/58 (47%) dyads purposively selected, and 9/10 facilitators participated in qualitative interviews; and we observed 12 sessions. We identified four themes: A) Someone to talk to helps dyads feel supported; B) NIDUS-Family helps carers change their perspective; C) Personalisation helps people living with dementia maintain their identity; and D) Small steps help dyads move forward. Conclusion Key causal pathway mechanisms were: regular sessions with a consistent facilitator providing space to discuss priorities, supporting carers to consider new perspectives and approaches to personalising care; and planning small actionable steps towards goals. Findings will support NIDUS-Family implementation.

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Section: Discussionmentioning

confidence: 72%

“…Focusing on attainable goals is common in rehabilitation (18) and non-controversially helpful (19). Similar themes -allowing a shared language, and focusing on most meaningful outcomes -were noted in a goal-focused treatment programme for people with haemophilia (20).…”

Section: Discussionmentioning

confidence: 78%

Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

Wyman,

Butler,

Morgan-Trimmer

et al. 2024

Preprint

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show abstract

“…The goal inventory can be prepared with input from patients [ 67 ], disease experts [ 66 ], and/or both [ 63 ], with special consideration given to the conceptual model of the disease and/or the product’s proposed mechanism of action. This may enhance detection of clinically meaningful results [ 68 ]. The inventory includes a list of common challenges that can be mapped to various domains and are realistically achievable following an intervention.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials

Cheema,

Dunn,

Chapman

et al. 2024

J Patient Rep Outcomes

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Background Goal attainment scaling (GAS), an established individualized, patient-centred outcome measure, is used to capture the patient’s voice. Although first introduced ~60 years ago, there are few published guidelines for implementing GAS, and almost none for its use when caregivers GAS is implemented with caregiver input. We conducted a systematic review of studies that implemented GAS with caregiver input; and examined variations in GAS implementation, analysis, and reporting. Methods Literature was retrieved from Medline, Embase, Cochrane, PsycInfo and CINAHL databases. We included randomized controlled trials (published between 1968 and November 2022) that used GAS as an outcome measure and involved caregiver input during goal setting. Results Of the 2610 studies imported for screening, 21 met the inclusion criteria. Most studies employed GAS as a primary outcome. The majority (76%) had children as study participants. The most common disorders represented were cerebral palsy, developmental disorders, and dementia/Alzheimer’s disease. The traditional five-point GAS scale, with levels from −2 to +2, was most often implemented, with −1 level typically being the baseline. However, most studies omitted essential GAS details from their reports including the number of goals set, number of attainment levels and whether any training was given to GAS facilitators. Conclusions GAS with caregiver input has been used in a limited number of randomized controlled trials, primarily in pediatric patients and adults with dementia. There is a variability in GAS implementation and many crucial details related to the specifics of GAS implementation are omitted from reports, which may limit reproducibility. Here we propose catalog that may be utilized when reporting research results pertaining to GAS with caregivers to enhance the application of this patient-centered outcome measure.

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“…As no clinician SDM tool has been published for decision‐making about haemophilia GT, the principal investigator (CT) and research nurse (JL) developed a prototype based on a prior published clinician decision box for decision about prophylaxis and immune tolerance induction for haemophilia, 6 the Ottawa Decision Support Framework, 9 the GOAL‐Hēm framework for patient centered outcomes, 10,11 surveys 12 and interviews of men with haemophilia 13 considered lived experience experts. The initial product information was based on the 52‐week phase 3 GENEr8‐1 clinical trial 1 and QOL data 14 .…”

Section: Methodsmentioning

confidence: 99%

Development of a haemophilia A gene therapy shared decision‐making tool for clinicians

Limjoco

Thornburg

2023

Haemophilia

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IntroductionAs gene therapies are incorporated into clinical practice, shared decision‐making (SDM) is recommended for implementation.AimTo inform development of a clinician SDM tool for haemophilia A gene therapy.MethodsClinicians at US Hemophilia Treatment Centers completed semi‐structured interviews about their experience with SDM and provided feedback on a clinician SDM tool prototype. Interviews were transcribed verbatim for coding and thematic content analysis.ResultsTen participants enrolled, eight physicians and two haemophilia nurses. All participants care for adults with haemophilia (1‐27 years of experience) and 7 have gene therapy trials open at their institution. Confidence in having a clinical discussion about gene therapy included none (N = 1), slight (N = 3), moderate (N = 5) and high (N = 1). All participants reported familiarity with SDM and agreed that the tool would be useful for their clinical practice. Key themes in participant feedback for the tool were (1) language and presentation; (2) content; and (3) implementation. Participants highlighted the importance of providing unbiased information and having companion tools with patient‐centric language.ConclusionThese data highlight the need for SDM tools for haemophilia A gene therapy. Key information to include in the tool are safety, efficacy, cost and detailed information on the gene therapy process. Data should be provided in an unbiased format and allow comparison to other treatments. The tool will be evaluated in clinical practice and refined as clinical trial data and real‐world experience mature.

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The GOAL‐Hēm journey: Shared decision making and patient‐centred outcomes

Cited by 10 publications

References 14 publications

Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

Process evaluation of a New psychosocial goal-setting and manualised support intervention for Independence in Dementia (NIDUS-Family)

A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials

Development of a haemophilia A gene therapy shared decision‐making tool for clinicians

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