Flexibility to manage and enhance quality of life among people with motor neurone disease.

OBJECTIVES: To identify influential factors for quality of life (QoL) among individuals with motor neurone disease (MND) and explore how regulatory flexibility and psychological flexibility may contribute towards maintaining and improving QoL. METHODS: Semi-structured interviews were conducted with 26 individuals with MND. Thematic analysis, using both inductive and deductive analyses, was employed to examine subjective QoL in view of previous understanding of QoL. RESULTS: Four factors were important for the QoL of participants: perceived illness prognosis, sense of self, concerns for significant others, and life to enjoy. These factors reflected psychological stress caused by MND, the participant's value system, and their beliefs about life. In optimising QoL, both regulatory flexibility and psychological flexibility were essential to maintain and enhance QoL. Often, regulatory flexibility was perceived among those employing a mindful approach, and psychological flexibility was found to involve savouring positive experiences. CONCLUSIONS: People with MND reported that seeking ways to both maintain and enhance their QoL is crucial, and that this may be accomplished by increasing flexibility through mindfulness and savouring. (171/200 words)Implications for rehabilitationPeople with motor neurone disease (MND) seek to maintain quality of life (QoL) following changes caused by the condition, whilst attempting to enhance QoL by maximising their positive experiences.Regulatory flexibility is essential to maintain QoL and it was closely associated with mindful approach so that MND is not perceived as an inevitable threat to QoL.Psychological flexibility was found to enhance QoL and it involves savouring positive experiences, while abandoning fault-finding of the current situation.Positive inter-personal interactions can encourage people with MND to engage with mindfulness and savouring for favourable outcomes in terms of QoL; current support services should orient towards both mindfulness and savouring.

Understanding quality of life across different clinical subtypes of multiple sclerosis: a thematic analysis.

PURPOSE: Multiple sclerosis (MS) is a neurological disease that has different clinical presentations and illness trajectories. The aim of this study was to explore factors that are important for quality of life (QoL) of people with MS (pwMS), and to understand how they may differ across three subtypes. METHODS: Both convenience and purposive sampling were employed. Semi-structured interviews were conducted with people with relapsing-remitting MS (n = 16), secondary progressive MS (n = 14), and primary progressive MS (n = 13). All interviews were audio recorded and then transcribed verbatim for thematic analysis involving both inductive and deductive processes. A separate analysis for each subtype was made during the inductive process before examining for similarities and differences across the three subtypes in the deductive process. FINDINGS: Four factors were identified to have an important influence on QoL of pwMS: restricted and disrupted enjoyment, disturbed future, challenged sense of self, and well-being of significant others. The themes reflect how pwMS commonly perceived enjoyment as a purpose of life, while also illustrating how their QoL may be questioned because of new perspectives going forward with MS, challenges to their sense of self, and increased concerns for their significant others as a result of MS. Subtype differences were attributed to different illness trajectories: relapsing or progressive. CONCLUSIONS: There are subtype differences in the negative impact of MS on QoL. Clinicians are encouraged to understand the challenges of different illness trajectories, in particular the traumatic nature of relapses and steady worsening of symptoms among those with progressive subtypes of MS.

Experience of telehealth in people with motor neurone disease using noninvasive ventilation.

INTRODUCTION: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV). METHODS: Semi-structured interviews were conducted with seven patients (five males; mean age = 63 yrs; median illness duration = 14 m), who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. RESULTS: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues. CONCLUSIONS: Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients' well-being, while potentially reducing unnecessary clinical contact.Implications for RehabilitationCare for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration.Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring.Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients.Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.

Exploring and Addressing 'Concerns' for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study.

BACKGROUND: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self. OBJECTIVE: In this research, we explored 'concerns' - one of the four aspects in the World Health Organisation's conceptualisation of QoL - towards adding to the literature. METHODS: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant's concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS. FINDINGS: The analysis showed that concerns for significant others contribute to participant's QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self. DISCUSSION: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others.

Incorporating self-reported questions for telemonitoring to optimize care of patients with MND on noninvasive ventilation (MND OptNIVent).

Objective: Previous studies suggest a positive impact of telehealth in the care of people with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). This study reports the development of self-reported questions for telemonitoring, using a tablet-based device Careportal®, in the care of patients with MND on noninvasive ventilation (NIV) and its initial impact. Methods: The study consisted of a question development phase and an evaluation phase of the use of Careportal®. The development phase employed a modified Delphi process. The evaluation phase involved a 24-week pilot study with 13 patients (median age = 66; median illness duration = 14 m), who were using NIV. The participants completed overnight oximetry and self-report questions via Careportal® each week, generating interventions where required. Patient-ventilator interaction (PVI) data were monitored and the revised ALS functional rating scale (ALSFRS-R) was completed. Results: Telemonitoring encompassing the newly developed 26-item symptom questions showed good feasibility and validity. During the evaluation phase, 61 interventions were made for 10 patients, including seven patients who had routine clinic appointments during the trial to optimize care. ALSFRS-R showed significant illness deteriorations. Blood oxygen saturation (SpO2) levels were maintained, time ventilated and inspiratory pressures increased during the trial. Conclusions: The MND OptNIVent question set together with weekly ventilator and oximetry monitoring facilitated the maintenance of ventilation and SpO2 levels despite illness progression. The use of the question set, and devices, such as Careportal®, facilitate care and may further enable a single point of contact for patients from which clinicians may offer proactive interventions to optimize care.

Why don't they accept non-invasive ventilation?: insight into the interpersonal perspectives of patients with motor neurone disease.

OBJECTIVES: Although non-invasive ventilation (NIV) can benefit survival and quality of life, it is rejected by a substantial proportion of people with motor neurone disease (MND). The aim of this study was to understand why some MND patients decline or withdraw from NIV. METHOD: Nine patients with MND (male = 7, mean age = 67 years) participated in this study. These patients, from a cohort of 35 patients who were offered NIV treatment to support respiratory muscle weakness, did not participate in NIV treatment when it was clinically appropriate. Semi-structured interviews and interpretative phenomenological analysis (IPA) were employed to explore these patient's experience of MND and their thoughts and understanding of NIV treatment. RESULTS: Using IPA, four themes were identified: preservation of the self, negative perceptions of NIV, negative experience with health care services, and not needing NIV. Further analysis identified the fundamental issue to be the maintenance of perceived self, which was interpreted to consist of the sense of autonomy, dignity, and quality of life. CONCLUSIONS: The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined. Statement of contribution What is already known on this subject? Non-invasive ventilation is widely used as an effective symptomatic therapy in MND, yet about a third of patients decline the treatment. Psychological disturbance generated by NIV use leads to negative experiences of the treatment. Decision-making about treatment potentials is complex and unique to each individual affected by perceived impact of disease. What does this study add? A decision concerning NIV uptake was influenced by perceived impact on individuals' sense of self. Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life. Individuals' sense of self was identified to have been challenged by the disease, NIV, and their experience of health care service.

Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis.

OBJECTIVE: Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients' perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. METHODS: Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple post-NIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology. RESULTS: Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness. CONCLUSIONS: This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.

Determinants of accepting non-invasive ventilation treatment in motor neurone disease: a quantitative analysis at point of need.

Objectives: Motor neurone disease (MND) progressively damages the nervous system causing wasting to muscles, including those used for breathing. There is robust evidence that non-invasive ventilation (NIV) relieves respiratory symptoms and improves quality of life in MND. Nevertheless, about a third of those who would benefit from NIV decline the treatment. The purpose of the study was to understand this phenomenon. Design: A cross-sectional quantitative analysis. Methods: Data including age, sex, MND symptomatology, general physical and mental health and psychological measures were collected from 27 patients and their family caregivers at the point of being offered ventilatory support based on physiological markers. Results: Quantitative analyses indicated no difference in patient characteristics or symptomatology between those who tolerated (n = 17) and those who declined (n = 10) NIV treatment. A comparison of family caregivers found no differences in physical or mental health or in caregiving distress, emphasising that this was high in both groups; however, family caregivers supporting NIV treatment were significantly more resilient, less neurotic and less anxious than family caregivers who did not. Regression analyses, forcing MND symptoms to enter the equation first, found caregiver resilience:commitment the strongest predictor of uptake of NIV treatment adding 22% to the 56% explained variance. Conclusion: Patients who tolerated NIV treatment had family caregivers who cope through finding meaning and purpose in their situation. Psychological support and proactive involvement for family caregivers in the management of the illness situation is indicated if acceptance of NIV treatment is to be maximised in MND.