Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Anestis, Eleftherios; Eccles, Fiona; Fletcher, Ian; French, Maddy; Simpson, Jane

doi:10.1016/j.pec.2020.03.023

Cited by 28 publications

(51 citation statements)

References 80 publications

(158 reference statements)

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“…Despite the emotional toll of breaking bad news, dealing with patients' emotional reactions did not seem to present a particular challenge for the participants of this survey. However, studies of patients with MNDDs have shown that patients are often dissatisfied with the lack of empathy shown by doctors during diagnosis delivery [10]. The seemingly contradictory finding here in that participants in this survey reported strong competency in this domain could either be attributed to participation bias (see limitations below) or different views and expectations between patients and professionals regarding the emotional aspects of the consultation.…”

Section: Discussioncontrasting

confidence: 56%

“…In particular, several chronic neurological conditions, such as Parkinson's disease (PD), multiple sclerosis (MS) and Huntington's disease (HD), are incurable, have a progressive nature and impact both physical and cognitive functions [8], while others, such as motor neurone disease (MND), can also be more immediately life threatening [9]. A scoping review of doctors' and patients' perspectives on giving and receiving the diagnosis of MND, MS or PD [10] revealed mixed results regarding patients' experiences and satisfaction with how diagnosis delivery was handled. The main factors which contributed to negative patient experiences were the often-limited duration of the consultation, inadequate information provision and a perceived insensitive approach by the professional breaking the news.…”

Section: Introductionmentioning

confidence: 99%

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Neurologists’ current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey

et al. 2021

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Background The communication of a life-changing diagnosis can be a difficult task for doctors with potential long-term effects on patient outcomes. Although several studies have addressed the experiences of individuals with motor neurodegenerative diseases in receiving this diagnosis, a significant research gap exists regarding professionals’ perspectives, especially in the UK. This study aimed to assess UK neurologists’ current practice and perspectives on delivering the diagnosis of a motor neurodegenerative disease, explore different aspects of the process and detail the potential challenges professionals might face. Methods We conducted an anonymised online survey with 44 questions, grouped into four sections; basic demographic information, current practice, the experience of breaking bad news and education and training needs. Results Forty-nine professionals completed the survey. Overall, participants seemed to meet the setting-related standards of good practice; however, they also acknowledged the difficulty of this aspect of their clinical work, with about half of participants (46.5%) reporting moderate levels of stress while breaking bad news. Patients’ relatives were not always included in diagnostic consultations and participants were more reluctant to promote a sense of optimism to patients with poorer prognosis. Although professionals reported spending a mean of around 30–40 min for the communication of these diagnoses, a significant proportion of participants (21–39%) reported significantly shorter consultation times, highlighting organisational issues related to lack of capacity. Finally, the majority of participants (75.5%) reported not following any specific guidelines or protocols but indicated their interest in receiving further training in breaking bad news (78.5%). Conclusions This was the first UK survey to address neurologists’ practice and experiences in communicating these diagnoses. Although meeting basic standards of good practice was reported by most professionals, we identified several areas of improvement. These included spending enough time to deliver the diagnosis appropriately, including patients’ relatives as a standard, promoting a sense of hope and responding to professionals’ training needs regarding breaking bad news.

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Section: Discussioncontrasting

confidence: 56%

Section: Introductionmentioning

confidence: 99%

Neurologists’ current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey

et al. 2021

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“…Even though the importance of psychological approaches in people with PD has received more recognition compared to other neurodegenerative conditions, such as Huntington’s disease and motor neuron disease (Anestis, Eccles, Fletcher, French, & Simpson, 2020; Simpson et al, 2019; Zarotti, Dale, Eccles, & Simpson, 2020; Zarotti, Mayberry, Ovaska‐stafford, Eccles, & Simpson, 2020), the current literature around psychological interventions for PD is mainly characterized by low‐level and/or underpowered studies, and more comprehensive high‐powered RCTs are urgently needed. In addition, since only five studies out of 56 involved samples with a mean age lower than 60, all of which showed promising results (Berardelli, Pasquini, Bloise, et al, 2015; Dreisig et al, 1999; Lundervold et al, 2013; Okai et al, 2013; Sproesser et al, 2010), further investigations are required to explore the impact of psychological interventions in younger patients, in particular due to the potentially lower severity of cognitive and motor difficulties.…”

Section: Discussionmentioning

confidence: 99%

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

et al. 2020

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Purpose To explore the heterogeneity of the literature on psychological interventions for psychological difficulties in people with Parkinson’s disease (PD). Methods A scoping review was performed across five major databases (MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) up to June 2020. Results From an initial return of 4911 citations, 56 studies were included, of which 21 were RCTs. A relatively wide range of therapeutic models have been adopted with people with PD, from common therapies such as cognitive behavioural therapy (CBT) and mindfulness, to less frequent approaches, for example, acceptance and commitment therapy (ACT) and psychodrama. The clinical implications of the findings are discussed, and suggestions are provided for future research on intervention studies and key psychological outcomes. Conclusions CBT appears to be effective in treating depression and sleep disorders in people with PD, while psychoeducation programmes alone should be avoided. The use of CBT to improve anxiety, quality of life, and impulse control, as well mindfulness‐based interventions, should be undertaken with some caution because of insufficient research and inconsistent results. As we enter the new decade, more high‐quality evidence is required for psychological interventions in people with PD in general and to corroborate preliminary positive findings on the adoption of less frequent approaches such as ACT. Practitioner points Parkinson’s disease is a progressive neurodegenerative condition associated with several psychological difficulties which be targeted by psychological interventions. Currently, cognitive behavioural therapy (CBT) can be recommended to treat depression and sleep disorders in people with Parkinson’s, while psychoeducation alone should be avoided. Caution is advised regarding the use of CBT and mindfulness‐based interventions to improve anxiety, quality of life, and impulse control. Further evidence is required for less common approaches, such as acceptance and commitment therapy, psychodrama, and EMDR.

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“…A systematic review evaluated the time of diagnosis in adults with rare and neurodegenerative diseases, but without genetic transmissibility, such as Amyotrophic Lateral Sclerosis (ALS), Multiple Sclerosis and Parkinson's Disease in European countries, Australia and the United States. Despite an increase in satisfaction regarding the transmission of the diagnosis in more recent articles, there was frequent dissatisfaction with the quality and nature of the information, with the lack of emotional support, content predominantly focused on technique and less on being, in addition to insu cient time to greater doctor-patient interaction at the time of diagnosis (23). Eenennaam et al (2020) developed a guide for communicating prognosis for ALS patients through a systematic review and consensus evaluated by neurologists, rehabilitating doctors, health researchers, patients, family members, an ethics specialist and spiritual counselors (24).…”

Section: Discussionmentioning

confidence: 99%

The moment of communicating the diagnosis of neuromuscular diseases: an integrative review

Iam

Melo

et al. 2021

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Background: The communication of diagnosis of neuromuscular genetic diseases is a very important moment, because if there is a lack of understanding about the disease, it can limit decision-making, compromising freedom and autonomy of the patients, with several repercussions, such as tendency towards more aggressive therapies in detriment of ensuring better quality of life. Methods: The guiding question was: did the moment of communicating the diagnosis of neuromuscular diseases value the ethical principles of beneficence, non-maleficence and autonomy? So it was carried out a integrative review with the search for original research articles in the portals Pubmed, Bireme and Scopus between November 2020 and March 2021, whose descriptors were (“Muscular Diseases" OR "Neuromuscular Diseases") AND "Truth Disclosure".Results: Only one article was found, published in 1983, which had as object of study the diagnosis of Duchenne Muscular Dystrophy. In this study, most patients received the diagnosis without the support of a family member, the time elapsed until the diagnosis was variable, with greater satisfaction for those who had their diagnosis more quickly. Another relevant factor in satisfaction was the scheduling of a return visit to answer questions and discuss the disease management.Conclusions: The present studies deal with clinical observations, screening methods, complementary exams and treatments, but little is discussed about the communication of the diagnosis and how this moment impacts on the lives of the patients. Thus, the ethical principles of non-maleficence, beneficence and autonomy must also be applied when diagnosing these diseases, in order to ensure a better doctor-patient relationship and better follow-up of the disease.

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Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Cited by 28 publications

References 80 publications

Neurologists’ current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey

Neurologists’ current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey

Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand?

The moment of communicating the diagnosis of neuromuscular diseases: an integrative review

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