Department of Clinical Sciences Lund, Oncology and Pathology, Institute for Palliative Care, Faculty of Medicine, Lund University, Lund, Sweden.
Department of Palliative Care and Advanced Home Health Care, Primary Health Care Skåne, Region Skåne, Lund, Sweden.
J Intellect Disabil Res. 2020 May;64(5):317-330. doi: 10.1111/jir.12721. Epub 2020 Feb 17.
Increasing life expectancy for people with an intellectual disability (ID) is resulting in more persons with cancer and a greater need for end-of-life (EoL) care. There is a need for knowledge of health care utilisation over the last year of life to plan for resources that support a high quality of care for cancer patients with ID. Therefore, the aims of the study were to compare (1) health care utilisation during the last year of life among cancer patients with ID and cancer patients without ID and (2) the place of death in these two groups.
The populations were defined using national data from the period 2002-2015, one with ID (n = 15 319) and one matched 5:1 from the general population (n = 72 511). Cancer was identified in the Cause of Death Register, resulting in two study cohorts with 775 cancer patients with ID (ID cohort) and 2968 cancer patients from the general population (gPop cohort).
Cancer patients with ID were less likely than those without ID to have at least one visit in specialist inpatient (relative risk 0.90, 95% confidence interval 0.87-0.93) and outpatient (0.88, 0.85-0.91) health care, during their last year of life. Those with ID were more likely to have no or fewer return visits than the patients in the gPop cohort (5 vs. 11, P < 0.001), also when stratifying on sex and median age at death. Most cancer patients with ID died in group homes or in their own homes and fewer in hospital (31%) as compared with cancer patients in the gPop cohort (55%, 0.57, 0.51-0.64).
Older cancer patients with ID were less likely to be assessed or treated by a specialist. This may suggest that people with ID have unaddressed or untreated distressing symptoms, which strongly contributes to a decreased quality of EoL care and a poor quality of life. There is a need to acquire further knowledge of the EoL care and to focus on adapting and evaluating quality indicators for older cancer patients with ID.
随着智障人士（ID）预期寿命的延长，越来越多的癌症患者和对临终关怀的需求不断增加。为了规划支持 ID 癌症患者高质量护理的资源，需要了解他们生命最后一年的医疗保健利用情况。因此，本研究的目的是比较（1）智障癌症患者和非智障癌症患者生命最后一年的医疗保健利用情况，以及（2）这两组患者的死亡地点。
本研究使用了 2002 年至 2015 年期间全国性数据定义了两个群体，一个是 ID 群体（n=15319），另一个是 ID 群体的 5 倍匹配的一般人群群体（n=72511）。在死因登记处确定癌症，由此产生了两个研究队列，包括 775 名 ID 癌症患者（ID 队列）和 2968 名来自一般人群的癌症患者（gPop 队列）。
与非 ID 癌症患者相比，ID 癌症患者在生命最后一年接受专科住院（相对风险 0.90，95%置信区间 0.87-0.93）和门诊（0.88，0.85-0.91）医疗保健的可能性较小。与 gPop 队列相比，ID 患者的无访或少访次数更多（5 次比 11 次，P<0.001），即使按性别和死亡时的中位年龄分层也是如此。大多数 ID 癌症患者死在集体住所或自己家中，而不是在医院（31%），而 gPop 队列的癌症患者死在医院的比例更高（55%，0.57，0.51-0.64）。
年龄较大的 ID 癌症患者接受专科评估或治疗的可能性较小。这可能表明 ID 患者存在未解决或未经治疗的痛苦症状，这极大地降低了临终关怀的质量和生活质量。需要进一步了解临终关怀，并关注适应和评估 ID 老年癌症患者的质量指标。
