Exercise and Progressive Supranuclear Palsy: the need for explicit exercise reporting

Abstract

BackgroundProgressive Supranuclear Palsy (PSP) is the most frequent form of atypical Parkinsonism. Although there is preliminary evidence for the benefits of gait rehabilitation, balance training and oculomotor exercises in PSP, the quality of reporting of exercise therapies appears mixed. The current investigation aims to evaluate the comprehensiveness of reporting of exercise and physical activity interventions in the PSP literature.MethodsTwo independent reviewers used the Consensus on Exercise Reporting Template (CERT) to extract all exercise intervention data from 11 studies included in a systematic review. CERT items covered: ‘what’ (materials), ‘who’ (instructor qualifications), ‘how’ (delivery), ‘where’ (location), ‘when’, ‘how much’ (dosage), ‘tailoring’ (what, how), and ‘how well’ (fidelity) exercise delivery complied with the protocol. Each exercise item was scored ‘1’ (adequately reported) or ‘0’ (not adequately reported or unclear). The CERT score was calculated, as well as the percentage of studies that reported each CERT item.ResultsThe CERT scores ranged from 3 to 12 out of 19. No PSP studies adequately described exercise elements that would allow exact replication of the interventions. Well-described items included exercise equipment, exercise settings, exercise therapy scheduling, frequency and duration. Poorly described items included decision rules for exercise progression, instructor qualifications, exercise adherence, motivation strategies, safety and adverse events associated with exercise therapies.DiscussionThe results revealed variability in the reporting of physical therapies for people living with PSP. Future exercise trials need to more comprehensively describe equipment, instructor qualifications, exercise and physical activity type, dosage, setting, individual tailoring of exercises, supervision, adherence, motivation strategies, progression decisions, safety and adverse events.ConclusionAlthough beneficial for people living with PSP, exercise and physical therapy interventions have been inadequately reported. It is recommended that evidence-based reporting templates be utilised to comprehensively document therapeutic exercise design, delivery and evaluation.

Patient and care partner views on exercise and structured physical activity for people with Progressive Supranuclear Palsy

“…Some of the barriers included: (i) perceptions of long delays in reaching a PSP diagnosis; (ii) lack of information about the benefits and contraindications to exercise and physical activity in PSP; (iii) fear of falling during physical activity; (iv) financial and transport constraints in getting to an exercise venue and (v) limited access to movement disorders specialists and PSP experts. These findings concur with the limited available published literature in atypical Parkinsonism [12,13,40] and the more extensive body of work in PD [22,23,50,51].…”

“…This typically needs to be observed for a period of time, such as two to four years, before making the provisional diagnosis [2,7]. It also remains unclear which forms of exercise, structured physical activities and movement rehabilitation are most beneficial for PSP given a paucity of research on this topic [12,13].…”

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care

“…The movement disorder neurologist assumes overall care, can refer to community resources or other professionals as needed, supports team members with the design of intervention plans and medical advice, and discusses advance directives (217,247). The physical therapist plays a key role in the evaluation of gait and balance, helping to prevent falls with assistive devices and exercise programs that focus on balance, flexibility, endurance, and eye movements (32,39,51,248). The occupational therapist evaluates ADL, offers guidance regarding home modifications, recommends assistive devices, suggests compensatory strategies for limited eye movements, and assesses driving performance.…”

Enablers to Exercise Participation in Progressive Supranuclear Palsy: Health Professional Perspectives

“…This was particularly challenging for PSP due to the paucity of research and the absence of clinical guidelines for this progressive neurological condition. In the absence for this evidence-based resource, nurses, and allied health professionals often turn to the European Clinical Guidelines for Parkinson's Disease to help inform therapy content, dosage, and mode of delivery ( 9 , 10 , 20 , 27 ). There is an urgent need for global clinical guidelines for exercise and physical activity in PSP.…”

“…An experienced facilitator (SS), who was not known to the participants, conducted the audio-recorded focus groups and individual interviews. A set of interview questions was informed by a systematic review ( 9 ), exercise audits ( 20 ), expert opinions from the research team, and consultation with the Parkinson's association representatives ( Table 1 ). Demographic data were collected about age, qualifications, and experience with movement disorders and PSP.…”