Exploring access to rehabilitation services from allied health professionals for patients with primary high-grade brain tumours

Abstract

Primary brain tumours account for less than 2% of cancer diagnoses in the UK but more people under 40 die from a brain tumour than from any other cancer. Despite developments in some treatment options, survival remains poor and patients suffer with considerable functional and cognitive deficits. Rehabilitation for patients with primary brain tumours produces statistically and clinically significant improvements in function. When compared, similar functional gains are made following rehabilitation for brain tumour patients and for those following stroke and traumatic brain injury. There have been very few studies looking at access to rehabilitation for this group of patients as a primary objective. However, existing studies and clinical experience suggest that patients with brain tumours do not access rehabilitation services frequently or easily, either locally or nationally. Therefore, this qualitative study addressed the reasons for this through semi-structured interviews of healthcare professionals, investigating their experiences of rehabilitation for this patient group and describing commonly identified barriers under key themes. The interviews gauged the views of eight healthcare professionals representing three professions in different settings, including hospital and community based. The resultant barriers fell under the following themes: professional knowledge and behaviours; services and systems; and the disease and its effects. Suggested solutions were wide ranging and included education, multidisciplinary meetings and specialist clinicians to co-ordinate care. The barriers to accessing rehabilitation for this group of patients are complex, but some of the solutions could be reached through education and co-ordination of services. Further research into the benefits of, and access to, rehabilitation for this group of patients is essential to ensure that patients with brain tumours are given opportunity to gain from the benefits of rehabilitation in the same way as other diagnoses, both cancer and non-cancer.

Don’t need help, don’t want help, can’t get help: How patients with brain tumors account for not using rehabilitation, psychosocial and community services

“…The results of this study support previous work which has shown that a lack of self-awareness, problem-solving skills, or decision-making abilities among patients with brain tumors may limit their ability to recognise their own needs, or to present themselves as better functioning than is actually the case [45,46]. In this study, patients reported being unable to recognise or articulate their own needs, or recall the support services available to address them, which acted as barriers that prevented them getting help.…”

“…Given these inabilities, clinicians may need to take a greater role in assessing patients' needs and putting plans in place to ensure they receive support. Despite this, some evidence suggests poorer referral processes for this patient group, at least in the area of rehabilitation [45][46][47]. Low referral rates in the presence of problems seem to stem from clinicians' limited knowledge of the benefits of allied health services [45], discomfort discussing brain tumors and their prognosis [47], and beliefs that rehabilitation is not beneficial for persons with poor prognosis [22,48].…”

“…Despite this, some evidence suggests poorer referral processes for this patient group, at least in the area of rehabilitation [45][46][47]. Low referral rates in the presence of problems seem to stem from clinicians' limited knowledge of the benefits of allied health services [45], discomfort discussing brain tumors and their prognosis [47], and beliefs that rehabilitation is not beneficial for persons with poor prognosis [22,48]. Targeting clinicians' lack of knowledge and subjective beliefs, alongside the development and implementation of screening and referral pathways, may help overcome the barriers to getting help that patients with impaired cognition face [49].…”

Occupational Therapy Use by Older Adults With Cancer

“…Once adults are aware of the services available, they become more likely to use them again. The literature on cancer rehabilitation commonly reports physician unawareness of occupational therapy and poor communication among fields as barriers to use because a referral is needed for access to care (Cheville, 2005;McCartney, Butler, & Acreman, 2011). Possibly, physicians (or nurse practitioners) who are aware of occupational therapy are more likely to refer.…”

The feasibility of a brain tumour website

“…For example, patients become dependent on caregivers for transportation when they lose their driver's license due to seizures. Limitations like this affect the patients' likelihood of and ability to participate in general rehabilitation programmes (McCartney et al, 2011), which may result in health disadvantages for the HGG population. An Internet-based intervention (IBI) may be an alternative for patients too challenged to participate in traditional faceto-face programmes (Forducey et al, 2012).…”