Parkinson’s Hub: An integrated pathway for people with Parkinson's and frailty

Mace, Thomas A.; Peel, Charlotte

doi:10.47795/fxok4296

Cited by 1 publication

(1 citation statement)

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“…However, the importance of a multidisciplinary team approach has been increasingly recognized in this area, and has led to the development of local ‘hub’ services in which a care coordinator serves as the central point of contact coordinating care between established services, including the neurologist, the specialist nurse, physiotherapists, occupational and speech and language therapists etc. [ 34 ]. Such integrated care pathways took years to develop but all started with mapping processes based on patient involvement and feedback, similar to the mapping process we present for CD [ 33 , 35 ].…”

Section: Discussionmentioning

confidence: 99%

Development of a patient journey map for people living with cervical dystonia

Benson¹,

Albanese

Bhatia³

et al. 2022

Orphanet J Rare Dis

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Background Patient journey maps are increasingly used as a tool that enables healthcare providers to refine their service provision to best meet patient needs. We developed a cervical dystonia patient journey map (CDPJM) that describes the holistic patient experience from pre-diagnosis through to long-term treatment. Methods The CDPJM was developed in 2 stages; a patient survey (open questions and multichoice) of 15 patients with CD was conducted to inform the design of the CDPJM, which was then refined and validated by an expert-patient focus group. Results Qualitative analysis of the patient survey supported five key stages of the patient journey: symptom onset, diagnosis and therapeutic relationship with healthcare professionals, initiation of care for CD, start of CD treatment, and living with treated CD. Following symptom onset, survey respondents described having multiple visits to their family doctor who prescribed strong pain killers and muscle relaxants and referred their patient to up to 10 different specialists for diagnosis. Over half (53.3%) of respondents had received ≥ 1 misdiagnosis. Respondents reported relief at having a diagnosis but a lack of understanding of the prognosis and treatment options; 46.7% said their neurologist did not spend enough time addressing their concerns. Survey respondents reported using a variety of alternative sources of information, including the internet (86.7%), self-help groups (66.7%) and information leaflets provided by health care professionals (60.0%). While botulinum toxin (BoNT) was consistently discussed as the main treatment option, some neurologists also mentioned physiotherapy, counselling, and other complementary approaches. However, patients were often left to seek complementary services themselves. Patients reported a ‘rollercoaster’ of relief with BoNT treatment with symptoms (and subsequent impact on daily life) returning towards the end of an injection cycle. “When BoNT works well I can return to an almost normal life … when the injections stop working so well, I have to rest more and avoid going to work and experience life restrictions.” Conclusions We present the first patient journey map for CD that can be used to guide local service mapping and to compare current provision with what patients say they want and need.

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Section: Discussionmentioning

confidence: 99%