Discrete choice experiment for eliciting preference for health services for patients with ALS and their informal caregivers

Abstract

Background Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition with a mean life expectancy of 3 years from first symptom. Understanding the factors that are important to both patients and their caregivers has the potential to enhance service delivery and engagement, and improve efficiency. The Discrete Choice Experiment (DCE) is a stated preferences method which asks service users to make trade-offs for various attributes of health services. This method is used to quantify preferences and shows the relative importance of the attributes in the experiment, to the service user. Methods A DCE with nine choice sets was developed to measure the preferences for health services of ALS patients and their caregivers and the relative importance of various aspects of care, such as timing of care, availability of services, and decision making. The DCE was presented to patients with ALS, and their caregivers, recruited from a national multidisciplinary clinic. A random effects probit model was applied to estimate the impact of each attribute on a participant’s choice. Results Patients demonstrated the strongest preferences about timing of receiving information about ALS. A strong preference was also placed on seeing the hospice care team later rather than early on in the illness. Patients also indicated their willingness to consider the use of communication devices. Grouping by stage of disease, patients who were in earlier stages of disease showed a strong preference for receipt of extensive information about ALS at the time of diagnosis. Caregivers showed a strong preference for engagement with healthcare professionals, an attribute that was not prioritised by patients. Conclusions The DCE method can be useful in uncovering priorities of patients and caregivers with ALS. Patients and caregivers have different priorities relating to health services and the provision of care in ALS, and patient preferences differ based on the stage and duration of their illness. Multidisciplinary teams must calibrate the delivery of care in the context of the differing expectations, needs and priorities of the patient/caregiver dyad.

Decision-making in palliative care: patient and family caregiver concordance and discordance—systematic review and narrative synthesis

“…Studies were conducted in Australia,46 47 52 the USA,24 25 32 33 41 55 56 58 Canada,27 28 35 53 59 Denmark,50 UK,23 43 48 54 Ireland,37 South Korea,21 29 30 34 39 40 57 Taiwan,36 38 Singapore,31 Germany,22 26 51 Hong Kong42 and the Netherlands 44 45 49. Quantitative studies reported more on factors associated with concordance and/or discordance while qualitative studies reported on reasons for and/or processes underpinning concordance and discordance.…”

“…The studies investigated a range of palliative and end-of-life care domains and contexts, including place of death,23 24 35 36 46 48 54 advance care planning and advance directives,30 39 42 52 53 57 euthanasia,45 artificial nutrition and hydration,22 43 cardiopulmonary resuscitation,27 29 hospice care,21 49 end-of-life care in general (including life-sustaining treatment, life-extending treatment and treatment approaching death)23 25 38 47 and, more broadly, care over the disease trajectory 50 51. Other studies focused more specifically on patients and family caregivers’ preferences, values and judgements with respect to care,28 32–34 37 40 55 and on the family caregiver and the broader family role in the decision-making process 26 31 41 44 56 58 59. Although many studies examined concordance in care preferences and decision-making between patients and family caregivers, only nine studies explicitly focused on discordance, disagreement and/or conflict between patients and family caregivers 26 28 29 31 37 40 41 44 56…”

“…Other studies focused more specifically on patients and family caregivers’ preferences, values and judgements with respect to care,28 32–34 37 40 55 and on the family caregiver and the broader family role in the decision-making process 26 31 41 44 56 58 59. Although many studies examined concordance in care preferences and decision-making between patients and family caregivers, only nine studies explicitly focused on discordance, disagreement and/or conflict between patients and family caregivers 26 28 29 31 37 40 41 44 56…”

“…We used the Standard Quality Assessment Criteria for Evaluating Primary Research Papers19 and the Mixed Methods Appraisal Tool (MMAT)20 to assess the quality of the included studies 21–59. Twenty-one quantitative,21–41 15 qualitative42–56 and 3 mixed-methods57–59 studies were included in the review.…”

“…We used the Standard Quality Assessment Criteria for Evaluating Primary Research Papers19 and the Mixed Methods Appraisal Tool (MMAT)20 to assess the quality of the included studies 21–59. Twenty-one quantitative,21–41 15 qualitative42–56 and 3 mixed-methods57–59 studies were included in the review. The Standard Quality Assessment Criteria for Evaluating Primary Research Papers was used to appraise the quantitative and qualitative studies because it allows for a replicable method of assessing the quality of a quantitative or qualitative study.…”