Table 1.
Summary of global health technology assessment guidance on the inclusion of carers' health-related quality of life (HRQL)
| Guidance on carers’ HRQL | Institute | Country | Section | References | Quotation |
|---|---|---|---|---|---|
| Specifically states carer outcomes should be included in reference case analysis (where relevant) | National Institute for Health and Care Excellence (NICE) | England and Wales* | 4.3.1.7 | [22] | “Evaluations should consider all health effects for patients, and, when relevant, carers. When presenting health effects for carers, evidence should be provided to show that the condition is associated with a substantial effect on carer's health-related quality of life and how the technology affects carers.” |
| Haute Autorité de Santé (HAS) | France | 1.3 | [23] | “The evaluation of health outcomes identifies the relevant health effects from the point of view of the populations concerned (i.e., patients, healthcare system users and informal caregivers under a collective perspective…)” | |
| Refers to including outcomes for all individuals in reference case analysis | Health Information and Quality Authority (HIQA) | Ireland | 2.3 | [24] | “All health benefits accruing to individuals should be included in the assessment of outcomes.” |
| Zorginstituut Nederland (ZiN) | Netherlands | 1.2 | [25] | “All relevant societal costs and benefits, irrespective of who bears the cost or to who the benefits go, should therefore be taken into account in the evaluation and reporting.” | |
| Inclusion of carer outcomes depends on other factors | Canadian Agency for Drugs and Technologies in Health (CADTH) | Canada |
3 5 10 |
[15] | “Based on the target population specified in the decision problem, researchers should consider any potential spillover impact…any associated spillover beyond the target population(s)…should be addressed in a non-reference case analysis.” |
| Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWIG) | Germany |
3.1.1 4.1.2 |
[16] | “Interventions can also have consequences for those indirectly affected, for example relatives and carers. If appropriate, these consequences can also be considered within the framework of the Institute’s reports.” | |
| Institute for Clinical and Economic Reviews (ICER) | USA |
3.5 3.10 |
[17] | “Specific scenario analyses (including one using a modified societal perspective that incorporates estimates such as … caregiver burden)… are conducted when appropriate.” | |
| Unclear | Scottish Medicines Consortium (SMC) | Scotland |
6.7.3 6.9 |
[19] |
“The perspective on outcomes should be all direct health effects whether for patients, or, where relevant, other individuals (principally carers).” “If appropriate data on utilities/QALYs for carers or other groups….it is outside the perspective adopted by the SMC.” |
| Tandvårds- och läkemedelsförmånsverket (TLV) | Sweden | Health Economics | [18] | “A societal perspective also includes costs and effects outside the heath care sector. In TLV’s health economic evaluations a societal perspective is applied.” | |
| All Wales Medicines Strategy Group (AWMSG) | Wales* | Not mentioned | [20] | ||
| Agenzia Italiana Del Farmaco (AIFA) | Italy | Not mentioned | [21] | ||
| Specifically states carer outcomes should not be included in reference case analysis | Pharmaceutical Benefits Advisory Committee (PBAC) | Australia | 3A 1.4 | [26] |
“The PBAC’s preferred health care system perspective includes health…and health-related outcomes…outcomes are those associated with the patient.” “…where the beneficiaries of health or other relevant outcomes are broader than the treated patient population (e.g., community, carers, dependants), include these are supplementary analyses.” |
| Pharmac | New Zealand | 6.1.2 | [27] | “It is recommended that only the health-related quality of life (HR-QoL) of the patient being treated should be included in the base-case analysis. If the treatment might have a measurable but indirect impact on the HR-QoL of others, such as family and caregivers, this could be estimated and discussed in the report as a scenario.” |
*Medicines are funded by NHS Wales following guidance from NICE and AWMSG: AWMSG considers NICE’s future work programme when determining whether to appraise a medicine and AWMSG guidance is interim to NICE guidance