Patient Empowerment in Clinical Genetics Services

McAllister, Marion; Payne, Katherine; MacLeod, Rhona; Nicholls, Stuart G.; Donnai, Dian; Davies, Linda

doi:10.1177/1359105308095063

Cited by 90 publications

(135 citation statements)

References 35 publications

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“…23 Empowerment as constructed by McAllister et al, 23 describes how clinical genetics services can maximise patient benefits and refers to the empowerment of entire families, not just individual patients. The concept is a 'state' (versus 'trait') including beliefs about one's abilities in the following areas relating to the genetic condition in the family: decision-making, knowledge and understanding, instrumentality (ability to make effective use of the health and social care systems for the benefit of the whole family) and future orientation.…”

Section: Discussionmentioning

confidence: 99%

“…Explore the conceptual relationship between these process attributes and empowerment, a concept summarising the valued outcomes of using clinical genetics services. 23 Qualitative methods were used because there is little evidence about how clinical genetics services can best be provided to maximise patient benefits. Qualitative methods are appropriate for research areas that are not well-understood, where the relevant variables have not yet been fully identified and where exploring people's views is important.…”

Section: Methodsmentioning

confidence: 99%

“…22,23 Seven focus groups were conducted with patients of clinical genetics services, their representatives from patient support organisations, and genetics health professionals in the UK. The focus group/interview schedule has been published elsewhere.…”

Section: Methodsmentioning

confidence: 99%

“…', 21 and further exploration of responses to this question. To privilege patient views, focus groups were supplemented by 19 one-to-one interviews with another set of patients and patient group representatives, 22,23 representing a broader range of genetic conditions (see Table 1), to obtain a critical assessment of themes identified in the focus groups and to check for data saturation. The final data analysis used the combined data from interviews and focus groups.…”

Section: Methodsmentioning

confidence: 99%

“…Previous papers reporting the results of this study have described findings relating to the effects of genetic diseases on individuals and families 21,22 and summarising the possible outcomes of care from using clinical genetics services. 23 The findings reported here will be useful in designing models of service delivery that could (a) be tested in intervention studies, and (b) potentially maximise patient benefits.…”

Section: Introductionmentioning

confidence: 91%

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What process attributes of clinical genetics services could maximise patient benefits?

et al. 2008

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There is limited evidence about what process attributes of clinical genetics services may be highly valued by patients and service providers. The aim in this qualitative grounded theory study was to explore what process attributes may be highly valued by those stakeholders. Seven focus groups (n ¼ 33) and nineteen one-to-one interviews were conducted (total sample size ¼ 52). Five process attributes were identified as highly valued by patients and health professionals: (1) local and accessible services (2) open access and follow-up, (3) coordinated, tailored family care, (4) quality of the patient -clinician relationship and (5) time to talk. These findings will be useful in designing models of service delivery that could be tested in intervention studies.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 91%

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What process attributes of clinical genetics services could maximise patient benefits?

et al. 2008

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Genetic Counselling Services: Outcomes

Skirton

2009

Encyclopedia of Life Sciences

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Outcome studies of genetic services have been undertaken for several decades, but defining outcomes measures that are relevant to this type of service has been challenging. Measures have included client retention of information (including the risk assessment), reproductive behaviour, psychological change and satisfaction. However, some of these outcomes, such as reproductive behaviour are inappropriate for assessment of a genetic service, and others, such as retention of recurrence risk information, appear to be less relevant to the client than to professionals. Resolution of uncertainty and changes in perception of personal control have been highlighted as aspects of the process of genetic counselling that significantly influence the outcome for the client. However, some studies have highlighted a potentially serious mismatch between the client's agenda and that of the service provider. There is a need for further collaborative work with clients to ensure that outcomes that are relevant and measurable are developed. Key concepts: Health services should be assessed to enable improvements to be made and to ensure that provision of the service is effective and that they meet the needs of service users. Clinical genetic services should be assessed using relevant outcome measures. The service user's retention of recurrence risk information has been used as an outcome measure, but may not be as important to service users as to professionals. Change in reproductive behaviour is not a viable outcome measure for clinical genetic services. Patient satisfaction surveys are not sufficient in themselves as outcome measures, but may contribute to the overall assessment of services. Service users report changes in their psychological state, such as ‘peace of mind’, as a benefit of using genetic services. Psychological change in the client is relevant as an outcome measure, but finding appropriate psychometric tools to assess these changes is challenging. There is evidence that there may be a mismatch between what service users require and what professionals provide. Development of usable outcome measures for genetic services requires input from all relevant stakeholders. Further work is still required to develop suitable outcome measure tools for genetic services.

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Expectations and Outcomes of Genetics Services

McAllister

2013

Encyclopedia of Life Sciences

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Measuring outcomes from clinical genetics services is difficult because the interventions offered focus on provision of information, counselling and genetic testing, and are unlikely to improve patient health status. Furthermore, patients are not always clear what to expect from a clinical genetics service. Patient reported outcome measures (PROMs) have recently gained prominence in healthcare evaluation worldwide. Although PROMs have often been used in research, the PROMs approach to service evaluation is new to clinical genetics, which have historically been evaluated using process measures, for example, number of genetic tests done, waiting times and number of patients attending. A range of PROMs is available for evaluating clinical genetics services, but few suitable PROMs have been robustly validated. Furthermore, PROMs use in this context is likely to be influenced by patients' changing expectations as they navigate their journey through clinical genetics services. Key Concepts: Measuring outcomes from clinical genetics services is difficult and there is no consensus about the best way to do this. Patient expectations may influence satisfaction with healthcare in general and responses to interventions provided in clinical genetics in particular. Health services are increasingly expected to demonstrate that they are delivering patient benefits. To this end, patient reported outcome measures (PROMs) are of growing importance in healthcare evaluation. Although PROMs have their limitations, they can be a useful supplement to traditional quality measures used in healthcare. It is timely for the clinical genetics community to work together in order to develop a standardised core set of quality outcome measures to evaluate services and interventions in research and clinical practice.

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Patient Empowerment in Clinical Genetics Services

Cited by 90 publications

References 35 publications

What process attributes of clinical genetics services could maximise patient benefits?

What process attributes of clinical genetics services could maximise patient benefits?

Genetic Counselling Services: Outcomes

Expectations and Outcomes of Genetics Services

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