Breitbarts* Meaning Centered Psychotherapy for MND patients: a pilot
study of an online psychological intervention.

Patients diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Progressive
Muscular Atrophy (PMA), collectively referred to as Motor Neuron Disease (MND),
are at increased risk for emotional distress. Psychological treatment can help
patients cope with the strains of living with ALS or PMA, and the relentless
progressive decline of physical functioning and early death. However, there is
currently insufficient evidence to recommend a specific psychotherapeutic
intervention.

In our previous qualitative study on hope in dyads with MND, living a
meaningful life was found to play an important role in keeping emotional
equilibrium, in line with findings in other terminal illnesses. Breitbart*s
Meaning Centred Psychotherapy (BMCP) has been found to be well-accepted and
effective in advanced cancer patients. BMCP is a time-limited, manualized
psychotherapy, focussing on sense of meaning and thereby relieving distress and
promoting psychological well-being. To date, BMCP has not been studied in MND
patients.

It is our aim to adjust BMCP for MND patients with elevated levels of emotional
distress. The intervention will be offered via Internet combined (blended)
with face to face sessions. Further referred to as internet based BMCP
(i-BMCP). Compared to conventional face to face delivery, using the internet
will allow wider availability, more flexibility and reduce the number of clinic
visits and thereby lowering the burden on the participating MND patients. This
study aims to answer the following questions with regard to i-BMCP in MND:
4. 1. Is it acceptable, feasible and are patients satisfied?
5. 2. Does it result in reduced distress and does it enhance the sense of
meaning in life?

We will use a mixed method design, collecting quantitative and qualitative
data. We will apply a replicated AB single-case experimental (SCE) design with
intervention startpoint randomization and individual semi structured interviews
in a five patients .

Meaning Centered Pyschotherapy (MCP) was originally developed by Breitbart and
colleagues as a group intervention and subsequently adapted to an
individualized format. The intervention focusses on helping patients with
advanced cancer develop or increase a sense of meaning in their lives. Both
group and individual BMCP have shown efficacy in 6 RCTs as a treatment for
psychological and existential distress in patients with advanced cancer. In
randomized controlled trials significant treatment effects were observed in
comparison with usual care and/or supportive psychotherapy.

This manualized intervention is grounded in the work of Victor Frankl and
utilizes didactics and experiential exercises that focus around themes related
to meaning in life and cancer. Each session addresses specific themes related
to an exploration of the concepts and sources of meaning, the relationships and
impact of disease on one*s sense of meaning and identity, and placing one*s
life in a historical and personal context (i.e. understanding one*s legacy).
Patients are asked to reflect on their life and on their the most significant
memories, relationships, traditions etc. that have made the greatest impact on
who they are today.

In addition to the intake there will be 7 weekly sessions. The third session
is a video contact session and the last session is face to face or a video
session (patients* choice). Session 2, 4, 5,and 6 are online with therapeutic
feedback on the mostly narrative assignments. The narrative assignments in this
online version are self-administrated, which allow for flexibility of timing
and only the intake is a physical face to face contact which lessens the
burden of traveling to the clinic for the patients. The evaluation session 7
can be a face to face or a video contact depending on the patient choice.

After the last session and measurement the interview (by video contact or
telephone) will be conducted by an independent interviewer.

This psychotherapeutic approach seems well-suited to address the existential
issues encountered by MND patients and strongly overlap with the problems
experienced by patients diagnosed with advanced cancer. Anecdotal evidence
indeed suggests that using elements of BMCP in face-to-face consultations is
well-received by MND patients, but further research is warranted. Moreover,
patients with MND often face difficulties with progressive immobility and
speech problems and offering a predominantly online therapy is patient
friendly, lowering physical barriers and making psychological support easy
accessible.

Participation is voluntary with a low study burden. Participants are already
receiving medical care at the Amsterdam UMC and offered a supplementary online
intervention blended with a limited number of visits to the clinic. The
intervention (8 sessions x 45 min) is likely to be of benefit, with a very low
anticipated risk of participating in the intervention for the selected group of
patients. No medical invasive diagnostics are employed, only a short interview
(max 30 min) and self-report measures that can be filled out online. Some
measurements are frequently administered during the control condition (max 10
weeks), during intervention (8 weeks) and during 10 weeks after the
intervention, yet these are very short (3-5 minutes). Pre and post assessments
(20 min) are scheduled only twice.