Hikari Ando

Achieving saturation in thematic analysis: development and refinement of a codebook.

Reaching a saturation point in thematic analysis is important to validity in qualitative studies, yet the process of achieving saturation is often left ambiguous. The lack of information about the process creates uncertainty in the timing of recruitment closure. This exploratory study was conducted to demonstrate a rigorous approach to reaching saturation through two-stage establishment of a codebook used for thematic analysis. The codebook development involved inductive analysis with six interviews, followed by a refinement of the coding system by applying them to an additional 33 interviews. These findings are discussed in relation to plausible pattern in code occurrence rate and suggested sample sizes for thematic analysis. Read More: http://www.amsciepub.com/doi/abs/10.2466/03.CP.3.4

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.

S57 Qualitative assessment of the experience of telemonitoring in ventilated patients with motor neurone disease

Background The National Institute for Health and care Excellence (NICE) has recently issued recommendations on the care of people with motor neurone disease (MND), promoting tailored care for each patient, Guideline 42, 2016. Previous studies suggest remote monitoring offers a facility to regularly monitor and interact with patients, providing timely interventions so it may facilitate delivery of the recommendations. The efficacy of this approach is dependent upon acceptability of telemonitoring to patients. Aim To understand the experiences of using telemonitoring in ventilated patients with MND. Methods Semi-structured interviews were conducted with seven patients (male = 5; mean age = 63 yrs). The median illness duration was 14 m (range = 7 m–13 yrs 7 m) and the median non-invasive ventilation (NIV) usage was 12 m (range = 0 m–3 yrs). Participants used a telemonitoring device (Docobo CAREPORTAL®) for six months, completed weekly nocturnal pulse oximetry and symptom-related questions. Five caregivers were present at the interviews and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. The interpretation was reviewed and supported by a multidisciplinary team examination. Findings Five themes were identified: Technical Challenges, Increased Self-Awareness, Taking Initiative, Benefits of Timely Intervention, and Reducing the Unnecessary. Whilst participants expressed general ease of Careportal® use, technical issues included; messaging system challenges, oximetry transmission, device fault, mobile signal loss. No other negative experience of using Careportal® was reported. Overall, participants expressed how telemonitoring enabled symptom awareness and interpretation. The device also enabled the participants to raise their concerns and/or requests to the healthcare professionals via the messaging system, and this was depicted as a sharp contrast to current communication with hospitals. Timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. It was also suggested that using Careportal® could reduce unnecessary cost/time and hassles created by attending hospital appointments. Conclusions Telemonitoring enabled participants to be actively involved in their care and they felt that the interventions were timely delivered to meet their needs. The findings suggest potential benefits of utilising Careportal ® in routine care as a contact point to accommodate different individual’s needs. Supported by an SBRI Grant

P190 Development of a respiratory question set for remote monitoring in motor neurone disease (MND)

Background Benefits of tele-monitoring (TM) of home non-invasive ventilation (NIV) in MND have been reported. Question sets for other respiratory conditions may not be transferrable. This work sought to develop questions transmitted via tablet device (Docobo Careportal®) allowing patients to inform clinicians of respiratory status, illness progression and NIV issues. Methods Modified Delphi methodology was used involving 4 stages: initial expert panel with clinicians (EP1), trial of questions and feedback sessions (FS) with patients, second panel with professionals (EP2). 21 questions were developed at EP1 and trialled with 9 patients (male = 7; mean = 58 years; mean illness duration = 52 months) for 8 weeks. FS were conducted after the trial to examine face validity, clarity and relevance. Each question was deemed clear if at least there was 80% agreement.18 questions were retained, 3 modified, 2 deleted and 5 added. EP2 repeated the process, the resulting final question set contained 26 items of which 17 generate a notification. Patients completed questions weekly, appropriateness of alerts was checked by phone call; the panel specified some notifications to be of greater clinical importance requiring intervention or further observation. It was possible to review reported issues against overnight oximetry and patient ventilation interaction data. Results For 12 weeks, 10 patients using NIV male = 7; mean (SD) age = 62 (8) years; median illness duration = 16.5 months, completed the final question set weekly. 210 alerts (geometric mean 15.3, IQ range 11–24.) were generated for; sleep quality, alertness, tiredness, NIV compliance, secretion clearance difficulty, increased secretions, and increased dyspnoea. 34 interventions resulted as described in the bar chart: the median number of interventions per patient was 2 (range = 0–9). Discussion To date the questions appear valid with no misunderstanding revealed. Appropriate and timely treatment adjustment and clinical review was facilitated. Prompt interventions may reduce psychological distress for patients and caregivers. This patient group are normally followed up three-monthly under the current NICE guidance; this question validation work suggests value in more frequent contact. Tele-monitoring, including symptom monitoring with a validated question set, may offer an alternative approach to following these complex patients.Abstract P190 Figure 1 Bar chart showing total number and type of interventions per participant

P156 Does analysis of patient-ventilator interaction offer benefits in addition to overnight pulse oximetry in patients with motor neurone disease being followed on non-invasive ventilation?

Introduction Non-invasiveventilation (NIV) is increasingly being offered to Motor Neurone Disease (MND) patients as studies report benefit insurvival and quality of life (QoL). Ventilator technology allows monitoring of patient–ventilator interaction. It is less clear whether such data yield useful additional information over pulse overnight oximetry. In a longitudinal study, MND patients were assessed both physiologically and psychologically prior to NIV initiation and 3monthly until death. Methods 35 patients were enrolled; 28 offered NIV; 11 declined and 17 established on treatment. At initiation all had nocturnal hypoventilation by symptoms andoximetry criteria. Nine patients (8 male; median age 60 years) had ≥12 months follow-up on ventilation; none required oxygen with NIV. Patient–ventilator interaction was assessed by analysis of the ‘memory card’ from the ventilator at 4–6 months post initiation (Point A) and at 10–12 months (Point B); QoL assessed by validated questionnaires within 2 weeks of memory card analysis. Results Median overnight oxygen saturation in the sample was 93% at point A and 94% at B; only 3 and 2 patients respectively exhibited ‘sub-optimal’ oximetry that is, >30 min below 90% saturation resulting in adjustment of ventilation. Minute Ventilation (MV) fell in the group from Point A to B (mean 6.97–6.34 l/min); a fall in MV (noted in five patients of which 1 exhibited “sub-optimal” oximetry) was associated with a fall in ALS FRS score denoting worsening health status (correlation coefficient 0.73; p=0.026). Ventilator triggering decreased overall in the group from Points A to B (mean 69.95–61.57% proportion of triggered breaths); a decrease in ventilator triggering (noted in six patients of which 1 exhibited “sub-optimal” oximetry) correlated with an increase in ALS AQ domain for emotion denoting worsening emotional functioning (correlation coefficient −0.89; p=0.002) with anon-significant trend noted between fall in triggered breaths and increase in Hospital Anxiety and Depression (HAD) score (correlation coefficient −0.68; p=0.055). Conclusion In MND, monitoring of patient–ventilator interaction may serve as a useful adjunct to pulse oximetry and symptom assessment. Further studies are needed to ascertain whether adjustment of ventilation based on this approach allows patients to gain full benefit from NIV.