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Ovarian cancer: A patient centric approach

Jan Lawry

By Jan Lawry

Jan is Director of J Lawry Healthcare Management Ltd, she has over twenty years experience in healthcare; health; and wellbeing and healthy lifestyle promotion.

According to World Health Organisation figures, ovarian cancer is the 18th most common cancer worldwide and the 6th most common cancer among women with nearly 300,000 diagnosed with the disease so far in 2018.

The Middle East and the North African ovarian cancer diagnostics and therapeutics market is expected to register a CAGR of 9.2% during the forecast period, 2018 to 2023. The Gulf Cooperation Council (GCC), (an alliance of six Middle Eastern countries: Saudi Arabia, Kuwait, the United Arab Emirates, Qatar, Bahrain, and Oman) is expected to dominate the market for ovarian cancer diagnostics and therapeutics due to the increasing incidence of ovarian cancer.

Increasing incidence of ovarian cancer

The annual mortality rate per 100,000 people from ovarian cancer in the Middle East and the North African region (MENA) has increased by 20.1% since 1990, an average of 0.9% a year. Thus, the increasing incidence of ovarian cancer is fueling the growth of the region’s ovarian cancer diagnostics and therapeutics market.

Additionally, greater use of combination therapies for the treatment of ovarian cancer, increasing population of aged women, and increase in healthcare expenditure in developing countries are fueling the growth of ovarian cancer diagnostics and therapeutics market.
Accurate diagnosis for ovarian cancer is critical, as in most cases, the cancer already begins to spread to the lymph nodes and outside of the pelvis at the time of diagnosis.

A lack of early detection and accurate diagnosis is often because ovarian cancer symptoms are frequently overlooked, and easily confused with other conditions. In addition, patent expiry of key drugs is also restraining the growth of the Middle East ovarian cancer diagnostics and therapeutics market.

Gulf Cooperation Council (GCC) to dominate the market

Ovarian cancer is the 11th most common type of cancer in the GCC states. Between January 1998 and December 2004, 1,180 ovarian cancer cases were reported from all GCC states, which is 2.0% of all cancers and 4.0% of cancers among females. Bahrain reported the highest incidence of ovarian cancer. The age-standardized rate (ASR) per 100,000 women was 7.4 for Bahrain, followed by Qatar (6.7), Kuwait (5.9), Oman (5.5), UAE (4.4), and KSA (2.3).

Epithelial ovarian cancer

Among ovarian cancers, the epithelial ovarian cancer is the most common type of ovarian cancer and the most aggressive gynaecological malignancy. Approximately 70% of patients are diagnosed at an advanced stage due to the asymptomatic nature of the disease. Firstline screening and diagnosis involves gynaecological examination combined with ultrasonography and CA-125 serum level assessment; surgery can include tumour debulking with the ultimate goal to perform complete macroscopic tumour resection. The initial response to standard primary treatment including surgical cytoreduction and adjuvant platinum-based combined chemotherapy is approximately 80%. A five-year survival rate is approximately 40%.

Risk factorsSigns of ovarian cancer

There are three main risk factors for high mortality in the first year after diagnosis among women with ovarian cancer: Firstly, the route to diagnosis; women diagnosed via an emergency presentation can be up to 56% more likely to die within the first year. Secondly, advanced age where women aged between 70 and 80 years may be up to 70% more likely to die in the year after diagnosis. Thirdly, tumour morphology (sub-type). Women with ‘unclassified epithelial’ morphology and ‘miscellaneous and unspecified morphology’ being at greater risk of death within the first year. This may be explained by factors relating to the disease presentation, such as patient performance status, rather than differences in underlying diagnosis; the procedures required to identify more accurate morphologies may not have been appropriate for these women. Key points in the ovarian cancer patient’s journey may be broadly categorised as follows and provides an insight into the challenges faced by ovarian cancer patients:

Signs and symptoms

Patients with early disease usually show few or no symptoms. Symptoms often come and go and are non-specific, such as fatigue, bloating, abdominal pain. As a result, making a clinical diagnosis of ovarian cancer is difficult.

First presentation

It is only once the disease has advanced that symptoms become more noticeable and defined, unfortunately 70% already have advanced disease.

Investigation and diagnosis

Ovarian cancer is a heterogeneous disease requiring a multidisciplinary team of experts to establish diagnosis and determine the appropriate next steps. Some patients are anxious about the impact their BRCA status may have on family members and currently not all women are being tested at diagnosis for BRCAm.

First line treatment

The main treatment approach for ovarian cancer is surgery which is aimed at removing as much of the cancer as possible. Patients describe chemotherapy as ‘very challenging’; they worry about associated side-effects and are looking to delay the time until their next chemotherapy.

Follow-up and maintenance

Patients then go through a period of surveillance involving no active treatment. Some physicians chose to give Bevacizumab or chemotherapy as maintenance but the majority just watch and wait. Patients during this period want to live as normal a life as possible.

Second line treatment

At this stage, many patients describe of the journey when they start to lose hope that they may have been cured post surgery and initial CT. Patients are often re-challenged with chemotherapy and some may also receive Bevacizumab. Many women are still not being BRCA tested and reasons for this include ease of access of testing and genetic counselling, reimbursement, and lack of awareness of guidelines. Some may also not initiate maintenance therapy even in BRCAm patients if the patient is not considered fit enough or wants a treatment break after chemotherapy.

Later line treatment

For later stage patients, fewer treatment options remain. By this time a patients platinum sensitivity status is better understood and many have also been tested for BRCA mutation. Some physicians continue to give chemotherapy but PARP targeted therapy with Lynparza is also utilized.

The patient centric approach

How do we truly learn about those challenges? In 2016, I had the privilege of being the expert facilitator of a global initiative to bring patients, carers, healthcare professionals, and pharmaceutical companies together to discuss the subject of ovarian cancer in a patient centric manner.

Woman with carer - patient centric approachWhat do I mean about “patient centric”? It is, in its simplest form, a participatory approach to healthcare delivery. For many physicians, it represents a fundamental cultural change for it is more than co-ordination of care or accountable care (although that is a part of it); patient-centricity represents an emerging vision for health care delivery – one that is more empowered, active and, above all, participatory. A patient that has access to their data and one that has a more collaborative and participatory relationship with their health care providers (the doctor, the oncologist, the specialist nurse, the hospital, the pharmacist etc.). For healthcare professionals, it necessitates an evolution in the role from the source of expertise and a paternalistic approach to being the co-producer of personalised care and information in a safe, welcoming environment that can help interpret the overwhelming information available (Dr Google, for instance!) and also coordinate the patient’s interaction with the whole healthcare delivery system. In other words, they help navigate the patient pathway.

The challenge of ovarian cancer and doesn’t just lie with clinicians, pharmaceutical companies now realise that a transformation is underway. I can see a genuine desire to make patients and carers an integral part of their research, to deliver the best possible experience and outcome for them. Patient participation makes pharmaceutical science meaningful and the very best companies will ensure that they understand how the impact of their science affects the lives of patients and their families.

  • In 2016, the global initiative for women with ovarian cancer had a clear remit; we gathered together women who were:
    Living with ovarian cancer and/or their caregivers;
  • Individuals who have skills or experiences in functional areas relevant to healthcare such as medical, science, research, digital, marketing/communications, healthcare, regulatory, etc;
  • Resided in the US, UK, Canada, Spain, Germany, and Sweden.

The clinical partners included leaders with specialist knowledge and experience not only in medical issues but also regulatory and commercial etc.

We looked to the patients and their carers to help healthcare professionals understand how certain aspects of study protocol impacts on patients lives, their views on unmet needs, patient insight into informed consent (for clinical trials), map out a generic patient pathway (there are enormous differences from country to country) and perhaps most important of all, to co-design a patient support app, patient facing information and to review educational materials.

There was also a focus on the communication challenges that exist between patients and their healthcare professionals, the low levels of awareness about BRCA testing, and ways to improve disease management and health outcomes.

In the long-weekend focus group, only a start could be made but in terms of educating healthcare professionals and initiating meaningful conversations, I felt we had made enormous strides. One patient wrote, “As a patient and advocate in the ovarian cancer community, I have an extensive network of other patients, advocacy organizations, researchers and GYN/oncologists from which to draw information and present the voice of our entire community. On occasion, it is frustrating to see these constituencies function in their individual worlds without interaction. Reading clinical trial results, I frequently will come away saying, “why didn’t they ask the patients before they started this study? If they had we could have helped solve the recruitment dilemma they encountered. I see Patient Partnership Programmes as a first solid step toward bringing these groups together to put the patient first. I see it as an exciting and challenging opportunity to bring the voice of the patient to the table”.

Early adopters

Earlier this year, I delivered the keynote address to healthcare students at the University Centre of South Devon (UK); I closed my speech by telling students to use technology wisely, form good networks, never stop learning but most of all never to forget why they chose healthcare as a profession.

“So my challenge to my fellow healthcare professionals is this – dare to involve, really involve, your patients and their carers. Become an “early adopter”, a forward-thinker, and take your fellow healthcare professionals with you on the journey.”

How to cope

Hold focus groups and workshops that genuinely include your patients, take time to listen to them – they are, after all, experts in their condition. Don’t be afraid to discuss the challenges your patients have faced (from their perspective, as well as your own as a healthcare professional). Ask your patients (and your colleagues) how do you define those challenges? What is there emotional as well as physical impact? What would you change – and where in the patient journey would you make those changes? Consider challenges, frustrations, pressure points, both positive and negative experiences. Gather together your patient experts, nurses and physicians to tackle key challenges facing patient-centered care. Listen, learn, and co-create solutions together in a sustained manner to deliver benefits for all patients. Co-produce patient facing information in a format, time and manner that is appropriate for your patients. They will thank you for it.